Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: nice friend on May 06, 2008, 12:28:38 AM
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Hi Andy :
How r u?.. i hope u will be fine....
Andy plz answer these question it will b gr8 favour of mine.
Here are the Questions ::::
here r my lab reports :
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml 9650 ng/ml
i m taking these medicines;
0700 AM 1500 PM 2300 PM
Ferriprox 500 mg tab 3 + 3 + 3 = 9 a day
Desferral 3 desferrals in one session injected to the infusion pump ithin 24 hours ...........
and my weight is 45 KG ..
can u plz tell me by calculating all of these information to your formula (or method watever that was) that how long i have to carry all of these treatments to get my ferritin level under 1000 ng/ml .....coze i didnt' understand that :biggrin :grin ........ plz plz reply bcoze i m waiting for ur reply ....... i will b realy thankfull to u ........
from
umair
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Hi Umair,
It can't be calculated because ferritin is not a true measure of the iron in your body. It's measurement is actually more for comparison from one test to the next, but either a liver scan or biopsy is needed to measure actual iron deposits. In addition, iron absorption from blood and food can't be accurately predicted.
How often are you taking desferal? For ferritin at your level, I would suggest at least 4 times per week, along with the ferriprox. Take 100-200 mg of Vitamin C shortly after you begin the pump. Within six months you will see a noticeable change. Because your ferritin is rather high, I would highly recommend doing this. Once your ferritin is in a more reasonable range (under 2000) you may be able to reduce desferal to twice weekly as long as you keep the ferriprox dose the same.
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Hi Andy :
thanx 4 answering my ......
i wll apply all that u say to do....
i m realy happy again bcoze i m an IRON-MAN famous hero hahaha...if if u dont like this little joke then plz ignore it .... its my habbit to be happy everytime & situation dont mind plz ok ...... bye
from umair
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Heheh, Iron Man, the movie made over $200 million dollars this weekend. :biggrin
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i m realy happy again bcoze i m an IRON-MAN famous hero hahaha...
Umair,
You are talking to someone who lives in Super Hero Heaven and is one himself (check the photo gallery) :wink
Doing a job at his store is on my dream list (provided he lets me read them every now and then :biggrin)
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hi sajid :
that Iron man abt which one u r talking... i think he is far behind
to me....let compare ..........
1) that iron man have to wear tones of iron to be an Iron man..
2) he made of a lot of iron and computer chip ( as u know all these r
realy expensive/costly )..
3)his costume made by Lock-Head-Martin company ( i got it by wathcing cartoon.) .
and here is the local Iron hummmmm Man or Boy hummmmm finaly Boy
bcoze i like to b a BOy instead of Man so ... Details of Iron boy.
1) i m 24/7 Iron-Boy
2) as i said that the iron man made of .......... so that y he is costly/expensive...
i m an iron made bcoze of blood transX and everyone know that BLOOD IS PRESICOUS....
3) costume of iron man designed by a company that mean he is dependent
of that company to b an iron man and me independent yeah self made iron boy
self made hero hhahahhahahhahhahahhahah..
how is this buddy ?....
a funny comparison do u like it... just kidding friends if u dont like it
then ignore it.... i wil never mind ... from
UMAIR
SOo who is the super hero iron man ?.......
Offcourse buddy I AM.......... Thats y i said
:::::::::::::: I am the class above the rest :::::::::::
:::::::::::::: I am the better than the BEST :::::::::::
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Way to go Umair :thumbup
ZAINI.
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:biggrin
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Hi :
as i mentioned above about 24/7 Ironman.
here is the Latest Updates :
IronMan is not only thinking but trying hard also to reduce his Armor '''
he found its diffcult to fly high and fast with that huge n heavy Iron made Armor ....
ironman's scientists ( My doctor ) suggest that reduce iron levels so you can fly more easily and fast so you will be more efficient and active ......
for this purpose Dr recommended that ironman should have to take desferal therapy 4-6 times a week along with ferriprox ...
Dr said that reducing armor ( Iron of your body ) will help you to stay safe in the fight against evil powers (liver and other complications of thalassemia ) ...
----------------------------------
ironman was facing the troublance in flying and operating aginst the evil power ( Body's evil germs and Thalassemia's complications ) so it was difficult to react fast and efficiently against the evil powers with that much heavy armor ( high levels of iron )..
Now He is taking desferal and ferriprox as dr prescribed..
Now he is feeling healthy & light in weight can move quickly and his liver is now rolling back to their real shape n size ...
in short : ironman was a little bit over weight .....
he has given blood sample test on 11 july to check their S.ferritin levels and L.F.T (Liver functioning Test ) ..
tommorow he will recieve the reports ..
please keep remember him in your prayers and Plea(s) ......
pray that ironman bcome a hero as soon as possiblle .
a realy worried Ironman
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Iron Man,
You have the spirit to succeed so no matter what the tests show, be determined to always do better than before. We can all live by that rule.
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yeah andy
i m still fresh for fight ..
n thanx andy for helping me in it ...
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You can do it!
:clapcheerboy
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Hi To All :
@Andy & Sajjid Thanx buddy's :
i m glad to anounce combination therapy of desferal and ferriprox works great for me....
yes it's....
i have S.ferritin result in my hand n i m going to post all reports comparatively ...
but before i start i want to say a big thank you from the bottom of my heart :love
to both of you :thankyou . for all the encouragement and help .... both you guys encouraged
me to start and then carry on chelation therapy ....i also want to mention that i m using
ferriprox since janaury ( 2007 ) but my ferritin were not as low as it is now ... that came
to only 13000 to 9650 ng from janaury 2007 to 30 april 2008 ...
here is comparison chart ...
especialy to Andy question abt chelation
« on: 06 May 2008, 05:28:38
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml 9650 ng/ml
i m taking these medicines;
0700 AM 1500 PM 2300 PM
Ferriprox 500 mg tab 3 + 3 + 3 = 9 a day
Desferral 3 desferrals in one session injected to the infusion pump within 24 hours ..
but now a days i m taking it in 12 -15 hours as dr presciped me
its my latest report i got today ....shuh ... i m getting succes after a long hard time ...
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml 3582 ng/ml
hurraay its working :yay :yay :stars :party
Ironman dont want to give up and never want to b a looser. he won't to accept the defeat, he will fight untill results come in his favour ...
both test done in aga khan labortery
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congratulations , i am soooooo happy for you :hugfriend :hugfriend
manal
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:clap
I'm so happy for you
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When I Asked God
When I Asked God for Strength
He Gave Me Difficult Situations to Face
When I Asked God for Brain & Brown
He Gave Me Puzzles in Life to Solve
When I Asked God for Happiness
He Showed Me Some Unhappy People
When I Asked God for Wealth
He Showed Me How to Work Hard
When I Asked God for Favors
He Showed Me Opportunities to Work Hard
When I Asked God for Peace
He Showed Me How to Help Others
God Gave Me Nothing I Wanted
He Gave Me Everything I Needed ==============================================
I don't fully agree with whatever has been said by thewriter but the point is that when you don't get what you ask for, you should not despair.Instead, look around, you may have been rewarded in a different way
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mashaAllah!!! congrats buddy :)!!!
Allah give us what ever is right for us, sometimes we ask for the things which in our point of view is right but Allah knows that it isn't right for us that is why he doesn't give us that thing and give us something better than that :)
it is said that when in heaven Allah will give us rewards in exchange of the prayers which didn't get accept, the person would wish that his none of the prayers would have been answered in the world so that he could have enjoyed the bounties of heaven :)
may Allah give all of us long, healthy, happy, peaceful life and strength to fight! ameen!!!!!!
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Iron Man Umair,
Well done! Your determination to totally comply with your chelation program is now showing the results that I knew it would. You will also find that if you stick to your program 100% that you will see your ferritin make even more dramatic drops in the upcoming months. Once it gets down from those previous dangerous levels, it is quite amazing how quickly you will see even more progress. One year from now I expect you will be telling us about a ferritin level of below 2000 and possibly even under 1000. You have seen the results reflected in your health and there is nothing I can say that will encourage you as much as knowing how much better your own health is as a result of your own hard work.
Umair, you have gone from being a good follower of advice to being a good example and a true leader of your fellow thals. Keep up the hard work and you will receive continued success.
:congrats
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hi andy :
thanx buddy for encouragement...
its all bcoze of encouragement of all of this site members especialy you and sajid ... i m still having desferal right now bcoze ii want to take it to normal levels .. and want make sure that reports was true coze i still didn't believe .. :dunno i do't know how i did it :dunno .. surprised and amzed to that surprize ..... keep encourging as u did well .. bcoze ur encouragement mean alot for me .. thank you
@ all those who remember me in their prayer n posts thank you to all especialy manal cherian sajjid and all other thank u u all r realy kind persons ... andy n ayesh both you also included in all ..
@ Ayesha
AOA :
thanx for compliment , encourgment or prayer watever it was but it was nice .. thanx ..
may ALLAH will fullfill all that you desireed ( in a postive way .. in the way mean .. he gave everything i needed ) best of luck i m waiting to hear that to you and asim wat i mentioned in previous posts ( iron level decreased ) ... okiey soo keep it on carefully keep taking chelation therapy ...................................
Allah give us what ever is right for us, sometimes we ask for the things which in our point of view is right but Allah knows that it isn't right for us that is why he doesn't give us that thing and give us something better than that
ABSOLUTELY RIGHT
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@ SAJID , ANDY & ALL
thanx buddys its alla bt ur prayers and regards ... :thankyou soo much for being with me throughout this and helping me alot .... thank you
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hi :
i have another thing to about my blood test result..
on third page of results i found two valeus which amazed me more...
i found increasment in one and stability in other ....
in janaury 2008 i last done these test and the result was ( writen below )
result normal range
W.B.C 27.0** x10E9/L (4-10)
Neutrophils 20 % (40-75)
and in july 2008 :
result normal range
W.B.C 13.1.0** x10E9/L ( 4-10)
Neutrophils 27% (40-75)
Platelets 539 x10E9/L (150-400)
last time when i done platelets test in april 2007 result was : 545 x10E9/L ...
i did't understand is it good or ...
its good that i m not going to efected by neutropena which is a side of ferriprox ..
still far away to Low-platelet type of condition ... these are the good signs .
on the other end W.B.C is lowering down .... pray that doctor keep conitnued my this
treatment .. bcoze it works alot ... to lower down iron level ....
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Hi Andy :
how r u ?.
i m taking Vit-D thrice a day , Vit-E once a day , ferriprox thrice a day , zincat syrup and
aldectone ( spirolacton tablets B.P) half a day ...
i want to ask that , can i take Vit-C along with these medicine permanantly ???
if i Not then, can i take it (Vit-C) only when i start chelation ( with defseral ) ??
Umair
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Yes, vit-c is better taken with desferal if your doctor hasn't recommended it for other treatment.
Taking unnecessary amounts will make the stored iron more mobile and risk settling in other organs such as heart.
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It is safe to take small amounts of vitamin C daily, but when it isn't taken at the same time as chelation, take it between meals so that it doesn't aid in iron being absorbed in your gut. You can take 200-250 mg with your chelation but take a lower dose, 100 mg, when it doesn't coincide with chelation. Thals shouldn't take more than 250 mg daily.
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thank you buddies :
i will definitely follow your advises ..
Take care
Umair
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Umair,
I see that your ferritin levels have come down drastically - congratulations. I hope that they came down even further soon, please keep us posted. It sounds like you are on a good plan, I think combination therapy is key when you are overloaded.
All the best,
Sharmin
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Hi Sharmin :
Thank you for the encouragement and wishing me the Luck ,...yes, combination therapy works alot ,i m still on it....i have given my blood symples to done my LFT and S.Ferritin on this thursday .. i hope results will come again in my favour ... i will update you all ,to my reports ... i always need your prayers, your enouragements , your sugesstions ... i also need your sugestions about medicines, tips and tricks about chelation therapy and other and therapies ....... plz keep me remember in your prayers...
Take care
UMAIR
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Hi :
Sorry for being too late to inform … I was
Her is my new reports … it could be more satisfactory, but .. bcoze of little discontinuity of Ferriprox ( 1&half or 2 weeks ) its not that much good as previous report was ..
as I was expecting, iron decreased but on a slow rate … I m happy to see my reports bocze it ( iron ) is coming down with less efforts than its seem’s to needed ( aggressive chelation for 6 months ) …. I hope, I will b writing here, that my iron is is within the normal range, very soon … :winks :thumbsup …
My Last Level : date 11/july/08
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml 3582 ng/ml
My Last Level : date 28/Aug/08
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml 2902 ng/ml
Aga Khan Labs..
680ng/ml decreased in one month …. :stars :party :yay :party :stars ….
For this time , it’s the most suitable quotation …
Roberto Clemente:
If I would be happy, I would be a bad ballplayer.
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That's excellent progress, Umair! Keep up the good work.
:high5
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Congratulations our hero, you are an inspiration :hugfriend
manal
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Umair,
I am glad to see that you are making progress:)
I hope to see you below 2000 very soon.
Best of luck,
Sharmin
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:clapcheerboy
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THANK YOU Andy, Manal, Sharmin and Sajid for the encouragement as i said many time that , your encouragement mean alot for me ,and iit show's its role in better results .... thank you for being with me since my Ferritin was a little above to 13000 ng/ml .... its your encouragement that pushed me forward to start and cary on chelation agressively ...AGAIN THANK YOU ALL ...KEEP ENCOURAGING .. i need it ...
best regards
take care
Umair
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That's wonderful Umair,well done,it was not an easy task, but you did it . :thumbs
Zaini.
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Umair,
Congrats!!! My ferritin was not soo high, thank God, and I had similar success!!!! Combination therapy really rocks!!!!
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@zaini
Absolutely Sis …
It was a little bit difficult to start, but then it become like a routine exercise…you people encouraged me and pushed me forward to do make it possible ,, soo you All r equally creditable for all these results.. bcoze of your and all peopple’s encouragement it becomes easy to achieve thisferritin levels. …
It wasn’t an easy task but BY THE GRACE OF ALMIGHTY it becomes very easy…..and it worked realy fast …
Take care
Umair
@ thal girl
thank you for the compliment ... yeah combination therapy make's the things easy for me ... and thanx God not side-effect from defferiprone throghout 2 year ... but now .my doc is planning to tunr me on exjade ( when my ferritin will touch 1000 ) ....
Take care
Umair
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That's great! I hope you get Exjade/Asunra soon so that you don't have to face the needles all the time.
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yeah it is ... after crossing many milestones, finaly i m near to reach the destination THANX GOD ...
thank you buddies for encouraging me to made this possible .... :ty :thankyou
shuuh.....
take care
umair
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WOoOopSs....!!! it my Latest Ferritin report done on 15-oct-2008 ... :dunno i don't know wat happened :dunno :rolleyes
:banghead :frustrated :banghead :frustrated :banghead :frustrated :banghead :frustrated
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml 3613 ng/ml
:thumbdown :thumbdown :banghead :frustrated :banghead :frustrated :banghead :sleepy :sleepy
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I am so sorry Umair :empathy but may be you should increase the dose? What did the doctor say and have you been talking more blood lately?
I would like you too to ask the doctor about taking desferal IV for a while, i once heard my doctor saying that in some of her patients when the ferritin is so high, they come to the hospital everyday for a while and take it IV and they decrease a 1000 in a month. Please check this and let me know.
Also did you ever did an MRI (ferriscan on the liver)??
But anyway, i know that you have high determination and even if the readings are not good this time, you will be able to achieve the desired levels. Trust me you will make it and we woill have a lot of time celebrating this, You were in the 9000s and see where you are today, be sure you will make it and keep it down :wink :thumbsup
We are all here for you my friend :hugfriend
manal
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Hello,
so sorry to hear this.. but dnt worry
i know you can do it dnt loose your hope, plz take your chelation properly..
may be there is any mess with your report..
b'coz it hppnd with me two or more times..
first day result was-6000
next day -7000
after 4 or 5 days-it was 710(so confusing)
anywaz don't worry you will achieve that level
you know before 5 or 6 year my ferr. lvl was 26,000..
just blv u can do it.
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Hi Manal Sis ,
Thanks for the Encouragement , its mean alot for me .. it push's me forward to comply on my treatment plan ... thanks alot Sis ...
the only difference i found between my previous tests andthis one , i never ever gave time more than 9 hours between chelation and giving blood sample for Ferritin test but this time i stopped desferal 4 and Ferriprox 3 days before the giving the sample , ... i think thats why it comes a little high but accurate result ...
Also did you ever did an MRI (ferriscan on the liver)??
I would like you too to ask the doctor about taking desferal IV for a while
i mentioned in another post that i m planing to pay a visit to my Doctor on this Friday to discuss my Reports and treatment plan .. Ferriscan is not available anywhere in Pakistan , i m planing to talk to my doctor about Ferriscan as well .... About Desferal IV .. everytime i when got have Tx i also have 2 desferal Vials IV with blood ... but i will think about having it at home as well as you mentioned it is more beneficial .....
What did the doctor say and have you been talking more blood lately?
i will talk about it to my doctor bcoze my Tx need is increasing as well .. last time my pre-Tx Hb was 8.2 its realy low .. i iwll talk about it to my doc .. and i will say ask her to add some Vitamin Tabs as well ... i like new meds hummmm :P hahhaha .....
@ Anie
Sis , its not a lab fault , it is accurate report bcoze i had a few back to back Txs in last 30 days and less Chelation bcoze you know about the Sajid that news disturbed me alot and i skipped my chelations for a while and aside my chelation plan , after that i had to stop Ferriprox bcoze of stomach ache ... Sooo i thnk Lab Report is reflecting the accurate image of my Ferritin Levels ... but i assure ouall people i will cover it realy soon ... and i willl take it down By the GRACE of GOD realy soon .... As Soon As Possible ...
------------------------------------
Thanks for your Concerns
Best Regards
Take Care
UMAIR
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It's ok Umair
you will improve so soon..we are waiting
just take your chelation proper..nd you will find result as you want..
Don't worry, up's and down's are the parts of the life..
Take care.. GOD BLESS YOU
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Okay Umair, since we know the reason, we can overcome it and please remember that compliance is the most thing Sajid would want you to do.
And i thing that this idea of taking desferal IV would help you a lot
take care
manal
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Thanks alot Anie & Manal ,,
i will try my best to comply on chelation and maintaining my HB ... and also to star chelation IV ... lets see wat happened ..... hope i wil get better than the best results..... i dont know why but today i m missing Sajid alot . and tears are coming in my eyes again and again ... i dont know why ......
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Dear Umair,
:console Some days are difficult, healing takes time my friend. But for the sake of those very people who we have lost my friend, we have to continue the legacies that they have started. We have to take care of ourselves and our friends the way they have taught us to.
You have come a long way, as Manal said, and you are holding on the a much lower ferritin level than you were earlier this year. There have been some set backs lately and so we understand why the levels have not come down as we would like for them to - but they will. You have seen success, and you know that it is possible. As Manal has said, some people do get admitted to the hospital and get IV desferal around the clock. In fact patients in North America sometimes get 24hr IV chelation for periods of time to get rid of iron overload. Please inquire about this procedure, you may be able to improve the situation in leaps and bounds.
I am very proud of you and Sajid would be very proud of you too. Despite the pain you have felt in losing your best friend you have continued urging everyone on. We need to take this pain and Sajid's memory to do something good. I know that you can do it. Just as Andy has done, he took the pain of losing his friend and little sister - did something so constructive and good - we are all here because those efforts and so many people have a better chance at life because of them. We are all connected by that very effort that Andy has made in honoring his friend. I am deeply inspired by that, we need to work hard and learn from that courage - we need to use these emotions that we feel for our lost friends to fuel our efforts.
Sharmin
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Sis ,
i m still trying to cope with my S.Fe levels , i hope that it come down soon .. i m not gona give up i will fight like sajid did .. i m strugling to maintain my hg and then i will start agressive chelation again .. i found the reason of rising ferritin ,
1) when i gave blood sample i was feeling a little fever and i heard that fever or other infection could raise S.F ..
2) i was sufering to stomach pain and i gave sample just after the injections for stomach ( Zantac, gravinate and No'spa ).
3) i haad never gave time more than 3-7 hours , between the chelation and blood sample for S.F test , but this time i stopped desferal 4 days and ferriprox 3 days before giving blood sample for the S.F test .... it coudl be main reason . and i thought my this report is more accurate than previous reports bcoze of stopping chelators a few days before S.F test ...
i m still hopeful to get back on track .. n i hope that i will be on track again , very soon ....
keep praying and encouraging me ....
Today , i will go to my doc to discuss about my stomach ... i will also discuss about to start more suplements ... yesterday i was out to home for Tx , here is something i m worried about that is i had my Last Tx ( Tx before this Tx ) just 6 days before at that time my pre-Tx Hb was 8.2 , but this time (yesterday ) just after 6 days and my Hb my pre-Tx Hb was 6.5 .. i didn't understand the reason of droping my Hb that much in just 6 days .. i will try to find out reason ...
Best Regards
Take Care
Umair
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Umair,
it is possible that your low Hb and high ferritin are both related to your recent illness. Now that you're feeling better, make sure you stick to your transfusion and chelation routines. You really won't know where your readings are until you've been healthy for a bit. Ferritin readings can jump all over the place when you're ill, so relax and take care of your routines.
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Hi Andy ,
i planed to have Tx on this saturday but then i post poned Tx this wednesday ( it is after 6 days of my last Tx ) to check that , is it happening coniously or it was an error in my Hg report ... i hope it will b declared as an error in the report , about ferritin that could be definatly bcoze of the illness and the change i made this time ... soo lets see wat happened on my next Tx .. uptill then i will comply on chelation ....
take care
umair
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Hello!
Kinny is having mild fever and I do not know whether i shall keep her on desferal while she's sick. So my question is:-
Can we go on desferal when we're:-
1.having flu
2.cough
3.fever
Hope to get answer Asap as I eager to noe the answer. TQ
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Hi TQ,
I think you should stop desferal in fever,i am not sure about cough or flu.Sharmin will be able to guide you better.I hope Kinny will feel better soon.
Zaini.
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Hello,
Its not recommended to have any form of chelation therapy while you have a fever.. Having a cough is ok to chelate, but not FEVER.... The flu is ok too...
Hope this helps
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Dear Smurfette & Zaini,
Thank you for the reply!!! i Felt go grateful to hv nice ppl around. :) i will follow the advise. I was thinking does anyone noe why is it not advisable to do desferal during fever?
Her fever started on the 15th (Saturday) : Night. Oh ya! Is it true when having fever her Hb will drop faster?
Kim & Kinny
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Hi Kim,
I don't know the technical reason why desferal should be stopped during fever,but with L1 its because of possible neutropenia,low white cells,i am not sure if that's the cause with desferal.
Hb does go down fast in fever,due to the high rate of hemolysis (breaking of red cells)and infection in the blood.
Hope it helps :hugfriend.
Zaini.
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Hi Kinny ,
here is the answer , i found it on Ayesha & Salman's website ,
http://www.thalassemia.com.pk/kb/chapter5.html
Should we take Deferal even when we have an illness?
We think its better to stop using Desferal untill you know the cause of your illness. This is because there is a family of germs, called Yersinia, that can use Desferal to grow on. These germs can cause an instestinal infection. Therefore, if you have a fever, or a tummy-ache, or diarrhoea, it is best to stop your Desferal, because if the fever is due to a Yersinia infection, the Desferal could make the infection worse. Once you know the illness is not due to Yersinia, you should start taking the Desferal again.
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Umair,
How are the transfusions and chelation coming along?
Sharmin
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Hi Sis ,
today , went to my thal center for TX . Tx were pretty smoth no illness and nothing else , chelation , last time i had chelation this saturday night to this monday , then rest for a whole day then today TX .. everything is fine , feeling a lil tired soo want some rest , later , i will catch you all ... Good news is my pre-tx Hb was 10.2 :yahoo ....
Best Regards
Take Care
Umair
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Umair,
That is great!!!
Sharmin
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mashaAllah :D congrats :D
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Hi Ayesha & Sharmin ,
i m back with full details , as i mentioned above taht my Hg was 10.2 , i m lucky that i got fresh blood , that were bleed just a day before my Tx ( on 25 Nov ) ... i left a blood sample for CBC, just before going for Tx .... i m hoepfull that Hg in CBC Test will differ to my thal center's result ...
my doc told me that your complexion is got much fair :shy ... i replied that before doing chelation there was a "Green Revolution" on m face , that is dis-apearing now , thats why :grin ... woops ... going out of topic ... sooo .....
Take Care and thanx for your cool remarks ....
Umair
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as i have started Desirox my mom has told me my skin color is getting fair day by day, but there is sum problem and it was before desirox too, that on my left check there are few white spots, :( can sumbody tell me what it can be?
my calcium level was 8.5, not low right? am taking calcium tabs too :(
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hummm.... i dont know and din't point exact reason of white spots but i heard that these could b a sign of calcium deficiancy . i dont know exactly but i heard that ... i dont know wat is the normal range of calcium ...
i reached to this site when i was searching onn white spots bcoze i saw it in my cousins as well who don't like to drink milk and other dairy products .. you may check it .... mayb it will helpful for you as welll ...
http://www.articlesbase.com/skin-care-articles/how-to-cure-white-spots-on-skin-434487.html
The medical term for white spots on skin is vitiligo or leucoderma. It’s a skin disease in which the skin loses its color due to some genetic or environmental causes. The white spots appear as patches of white skin without pigment.
Edited : White spots on skin are common in people who suffer from autoimmune diseases. One of these diseases is adrenocortical insufficiency. The adrenal gland is responsible for producing a hormone called corticosteroid. This disease occurs when there is a deficiency of this hormone in our body. Because of this reason the most common treatment as suggested by doctors for vitiligo is corticosteroid cream.
Another treatment for the cure of white spots on skin is exposure to sunlight for long durations of time or artificial phototherapy. Cells that are responsible for pigmentation become active when the skin if exposed to light.
Melanocytes are cells located in the skin that cause pigmentation. A recent advancement in the medical science has made it possible to transplant these cells from some other part of the body to the affected skin area. As a result of this transplantation vitiligo or white spots on skin can be completely cured.
Cosmetics can also be used to cover up the white spots. However, a medical treatment should be employed to control the disease as it may become widespread and uncontrollable. It should also be known that since this disease is inherited, it cannot be prevented. Because of this reason, a good and effective treatment is required in order to avoid psychological effects, frustration and embarrassment.
There are some other skin conditions or disorders in which the skin loses its color and becomes either of lighter or darker shade. Before using any of the treatments for vitiligo it is better to consult a dermatologist and confirm the symptoms.
Most of the time only topical treatments are suggested by doctors for skin disorders including vitiligo, acne and eczema. However, some oral pills may also be prescribed if the condition is severe.
Note : i edited this post , added a link where i quote this info and added a para which i missed last time ( second para of this quote ) ....
Take Care
umair
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environmental change, yea it can be, i go out in sunlight alot too, + white spot appears n disappears, but few takes time and i dont like them :wah
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Hi there
Some white spots can indeed be vitiligo but others are not. You have to check this with a skin specialist but you have to tell him/her that you have thal because one of the treatment for vitiligo is I believe a medicine which is used in malaria and which I think (not sure) is contraindicated in thal. Also supplements of cod liver oil is advised and as Umair rightly said sunshine.
Hope you can find a solution.
Jade
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Hi Buddies ,
please check this thread ... thank you
Skin Care , White Heads and Black Heads related
http://www.thalassemiapatientsandfriends.com/index.php?topic=2372.0
Umair
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Hi All Buddies ,
i got my Ferritin Report , ALHUMDU-LILLAH (All praise belongs to God) , its very much encouraging ... i need more hard work to get my goals....
its my Latest Ferritin report done on 15-oct-2008
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml 3613 ng/ml
My Latest S.Fe Report , done on 20-January-2009
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml [bgcolor=#ffff00]2330 ng/ml[/bgcolor]
:yay :high5 :stars :love :party :yay :high5 :stars :love :party :yay :high5 :stars :love :party
:thankyou2 :thankyou2 :thankyou2
Thank you for the support and encouragement , i still need that all ....
My Treatment Plan : Ferriprox 9 pills a day along with 96 hours of chelation, as two days coniiously and then rest then again two days of chelation ( 2 days = 48 hours n 2 days again = 48 48+48 = 96 hours ) between 2 Transfussions, Gap between my Transfusion is 10-12 days .... i doubled my chelation hours somewhere at the last of december or starting of 2009 ( in other words 3-4 weeks ago )
Best Regards
Take Care
Umair
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That's great Umair :biggrin keep up the spirit :thumbs Keep on chelating :) .
Zaini.
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:thankyou2 Sis for encouragement and supprot :thankyou2
Take cAre
Umair
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How was your liver ultra sound?
Zaini.
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Umair, i am truely soooooooo happy for you. You have done a super job, can't imagine how i am proud of you. Keep up the good work . Congratulations my friend
Manal
:congrats :bigparty :bigparty :bigparty :clapcheerboy :clapcheerboy :clapcheerboy :clapcheerboy :clapcheerboy :clap :clap :yahoo :yahoo :thumbsup :thumbsup
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Umair,
I am so so so so so unbelievably happy!!!!!!
(http://www.commentsarchive.com/congratulations/congratulations_comment_graphic_02.jpg)
(http://www.commentsarchive.com/congratulations/congratulations_comment_graphic_02.jpg)
Thank god!!! You have done such a great job Umair I am so proud of you!!!!!
Sharmin
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My Latest S.Fe Report , done on 20-January-2009
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml [bgcolor=#ffff00]2330 ng/ml[/bgcolor]
Thank you for the support and encouragement , i still need that all ....
My Treatment Plan : Ferriprox 9 pills a day along with 96 hours of chelation, as two days coniiously and then rest then again two days of chelation ( 2 days = 48 hours n 2 days again = 48 48+48 = 96 hours ) between 2 Transfussions, Gap between my Transfusion is 10-12 days .... i doubled my chelation hours somewhere at the last of december or starting of 2009 ( in other words 3-4 weeks ago )
Hey, that's excellent news!!! Your fe is lower than mine... :hugfriend :clap :flowers
I dunno how much ferriprox pills you took before, but when I started to take 3x3 pills a day I started to feel hungry day and night. I hope you will not have that side effect. Some people say to me 'it is not wrong with your low weight', but i found it very annoying. I earned 9 kilo's in 1.5 year ???
Btw dont forget to take some food you really like, because you must celerate this historical achievement!!!!! :congrats
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We are so happy for you Nice Freind. Please keep up the good work.
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:thumbsup :thumbsup :thumbsup :thumbsup :thumbsup :thumbsup :thumbsup :thumbsup :thumbsup
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Thank you All ,
:thankyou2 for encouraging, helping and supporting me alot .... i m so happy today ...
please keep encouragin and supporting me bcoze i need your help support and encouragement ..
i will comply wiith chelation a lil more till my fe come below 1000 ....
Dore , yeah me too feel hungry all the day but i controled my hunger , and i planed a short meal between y two main meals .. i love to eat fish between the meals ... yeah, its time to celebrrate.... hurrraye .... :yay
Take Care
Umair
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Umair,
Many people want to give up when their ferritin is high, but you did not. Your determination should be an example to anyone who has doubts about their ability to survive. High iron can be beat with work and you're proof of this. I am so proud of you, buddy.
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Well done Umair,
if you continue at this rate, you will soon need iron pills!!!
(a little joke).
Keep on with the good work,
Lena.
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Thank you Andy for the compliment , it was almost impossible without your support, encouragement and help ... you people worked alot for me THANX ALOT BUDDIES ..
@ Lena
hummm iron pills hahahaha :P .... Thanx Alot for encouraging me .... :thankyou2
Best Regards
Take Care
Umair
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Hi Andy hoping u will be fine.It is first time that I am writing something direct to you. Hoping a response from your side.
My son's Ferritin level is on 2460 ng. His wt is 15 kg and taking 1000 mg Deferriprone(Ferinil) per day with 3 voils of Desferal per week. Transfusion routine is 300 ml r/cells after almost 25 days.
Plz advise further.
Thnx in adv.
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Hi Bhatti,
I need a bit more information. For how long has your son been using this combination of chelators?
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Hello Andy, Hoping u will be fine. Sorry for so late post.
Mujtaba is using Desferal and Ferinil since Jul 2008. But during the period his ferinil remain stopped for two months and also not used desferal in 100% same routine. Total medication stands a little bit low then the average prescribed.
Wheather it is enough dose for him. Thanx
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Hi Buddies,
this time a good news but a little lower than expectations , i think stomach ache and Malaria played their role in it, as after both i had an extra Tx that was not scheduled bfore suffering to Malaria and stomach ache , and at the time was suffering to malaria and stomach ache i wasn't able to wear pump or to have IV desferal bcoze of illnes ... soo , its not unexpectable result , but i was expecting for a little better result ... i got my CBC and LFT reports as well , i m finding their thread to share those reports ...
My Last S.Fe Report , done on 20-January-2009
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml 2330 ng/m
My Latest S.Fe Report , done on 17-March-2009
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml 2060 ng/m
Take Care
Umair
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Umair,
That is great! You are making progress! That is very good for such a short period of time. Keep it up buddy, it is going to get much better very soon! I hope to see an even lower number next time.
Sharmin
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...
My Latest S.Fe Report , done on 17-March-2009
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml 2060 ng/m
Take Care
Umair
:high5 :thumbs :clapcheergirl
Better slow than no report. Remember my reports, I dont even change the 2*3*30 into something else! :gaah
Doortje :)
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Sharmin & Dore ,
Thank you for encouragement buut i was expecting a little more decrease in my Fe bcoze since my last S.fe report ( 21 Janaury ) i was trying very hard and i increased the no# of days of chelation between the gap of 2 Transfussions , so i was expecting a little more , but i was feared of report like this one as well , bcoze i had 2 -3 extra transfussions during this time period bcoze of Malaria and Stomach ache, and during the time i was suffering to stomach ache and malaria i didn't manage to contineu chelation , no chelation at that time adn 2-3 extra Txs is the main reason of the report lke this ... its very discouraging to have a report like this one when you striving hardder than ever ... this time i was striving realy hard to get my Fe level below 1500ng , but its ok ... Sometimes , He (GOD) send's us failure so we can be humble. .....
Take Care
Umair
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Umair, i think this is an excellent result with all the the passing stuff(malaria, extra transfusion,...) you are a real inspiration my friend and very soon you will be under the 1000 level, just keep the hard work, it deserves :wink
manal
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Manal ,
Thank you for encouraging me to keep it On , yeah its not bad results with all that passed through since last 30 days . i m waiting for the day when it will come below 1000 since last year , I am hopefull to achieve this milestone realy soon ... i will try my best to keep chelting agressively ...
How is Ahmed doing ?? and wat about his Ferritin and Hg and the need of Tx ??
Take Care
Umair
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You are welcome my friend :hugfriend
Ahmad is fine alhamdullah, now we are on hydroxyurea for the second month and i hope it will help him. Last month his HB was 7 and his ferritin was 62
manal
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Umair,
(http://www.youthink.com/quiz_images/full_184203037.jpg)
Keep it up Bro,and one day just like lena said you'll need iron pills :rotfl :rotfl :rotfl I am so happy for you.
Zaini.
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Manal ,
its nice to hear that he is doing fine , i hope that hydrea will work for him ... Best Wishes and Regards for Ahmed ...
Zaini ,
:thankyou2 for encouragement , i m eagerly waiting for that day, when i will b asking to my chemist that he have any Calcium + Iron suppplement hehhehe :teehee :grin .....
Best Regards
Take Care
Umair
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Oho, I beated you. I am sure you will pass me really soon. Being ill is not the good thing when you try to ski hard for the mountain to the sea (or something else). Oh, i hear everyon talking about iron pills. One girl of the Dutch thal organisation had immediately to stop with chelation. She has only a fe of 40 at the moment! Btw I know now how happy one can feel when you see such drop. Umair dont be afraid when you dont see me only today. Itunes had the clever idea to instal Bonjour (I dont know even what it is) but it is nagging about a well-know virusscanner (which I dont want to have) and that always throttle my msn.... :biggrin
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Dore,
it was realy difficult to read your reply ( bcoze of colour :grin ) and i m feeling very jelous (a joke) that my Fe is high and your ...... but its bcoze of hard work , soo you deserve it ... :congrats ... its gr8 to hear that your Fe is dropping, keep it up :thumbsup ... about iron pills , not in soon future :grin ... (a Reply in short time) i will try to reply in detail very soon ...
Best Regards
Take Care
Umair
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Oho, I beated you. I am sure you will pass me really soon. Being ill is not the good thing when you try to ski hard for the mountain to the sea (or something else). Oh, i hear everyon talking about iron pills. One girl of the Dutch thal organisation had immediately to stop with chelation. She has only a fe of 40 at the moment! Btw I know now how happy one can feel when you see such drop. Umair dont be afraid when you dont see me only today. Itunes had the clever idea to instal Bonjour (I dont know even what it is) but it is nagging about a well-know virusscanner (which I dont want to have) and that always throttle my msn.. :biggrin
Better?
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Dore ,
Thanks for changing font colour :grin .. i m not beated you, won this time ... its good to see your Fe is decreasing .. mine is also decreasing although slow but it is ... yeah being ill is not something good ...me and iron pillss hahahaha it will take too much time to get on this stage .. i think that Dutch girl were to compliant with chelation and never checked her Fe during that time ... yeah , if my Fe drop like that girl i would be very happy and first thing that i would like to do is to eat prawns and then have a few Transfussions to maintain my Hb between 11-13 ... and to enjoy something like this :happydance ...
@ virus scan , ( its out of the topic of this thread :teehee ) i dont like virus scanners and i install virus scanner just before re-installing windows :teehee ....
Best Regards
Take Care
Umair
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Use the free version of Avast for virus scanning. It's free and one of the best programs out there. You should always have a virus scanner on your system, along with free anti-spyware programs. Maybe I should do a side post on all the good free programs that can protect your computer. Even our thal world is not immune.
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Use the free version of Avast for virus scanning. It's free and one of the best programs out there. You should always have a virus scanner on your system, along with free anti-spyware programs. Maybe I should do a side post on all the good free programs that can protect your computer. Even our thal world is not immune.
I have one from the provider, but microsoft does not understand it is one. My notebook is at the egde of life and death. I just hope he will be alive untill the day of summer that I got my "Propedeuse" of College Law.
Nevertheless it is a good idea.
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Andy and Dore ,
my computer is very slow to instal a virus scanner on it soo, i decided to put it on chelation ( removing all the data ( Formatting Drives ) and re-instal the windows l, like chelator remove's all the iron ) when-ever it slow down or when-ever it start giving errors :grin ... but my favr8 virus scanner is norton but if you're unable to instal norton then McAfee's all in one virus protector is also good :thumbsup ... hey buddies, this thread is running out of topic ...
Umair
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I used Norton for years and it became too cumbersome and slow so I switched to FREE Avast. It was a very good decision. McAfee has never made a program I liked. If you want your comp to run faster, uninstall Norton and switch to Avast.
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Forget window$. switch to Linux and you will not have to worry about any virus :thumbup
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Must Read It.....
Desferals 3vial of 500mg in 10-15 hours a day , 2-3 times a week,
At the time my doc prescripted me this plan, i was very moody at that time , and it was dependent on my mood only. i wasn't keen in chelation. i wasn't compliant and faithful in chelation .. sometimes, i dont have even one day of chelation between 2 Transfusions , at that time . but when i took interest in chelation and bcome compliant to chelation and determined to take S.Fe under 1000 ( so i can be able to start Exjade ( AKA Asunra ) as my doctor gave me intiative to start exjade if my S.Fe would below 1000 ) , i asked a few questions on this forum and in the light of answers i made my own chelation plan ...here are those Answers .....
once, Zaini Replied to my Question :
A doctor from Novartis,while giving us an introduction to Asunra,told us that a unit of blood (approx 300 ml) contains 250 mg of iron.
& C.F Replied to same Question :
one unit of blood contains approx 250mg of iron. The average dose of desferal infusion for 6-8 hours removes approx 6-10mg of iron. The iron accumulation ofcourse depends on the frequency of blood transfusion and number of days of desferal infusions.
Yeah, I replied As Well :grin .
thinking the same .. 250 mg per Tx and then minus only 8- 10 mg per desferal therapy .. its mean i have to be on desferal on daily basis after a Tx , no rest between to Tx , if i use Desferal alone 25 times then it will remove the iron equel to one Tx .. and i m unable to have 25 desferal therrapies in 15 day ( between two transfussions ) ... combination therapy is the only choice ...
if 6-8 hours chelation removes 8-10 mg of iron , so i increased the duration from 12 to 23-24 hours chelation and 4 days a week ...............
if 6-8 hours is removing 8-10mg then 20 hours of chelation remove almost 20mg 23multipply by 4 = 92mg per chelation + 9tabs a day 500mg deferiprone ... it was good but S.Fe was decreasing very slowly....
===================================
it was my Chelation plan before last in last October when my S.Fe went high again : From Aug to Oct-15
august2008 : S.Fe 2902
oct-15-08 : S.Fe 3613[/color]
===================================
Then i made my own chelatin plan for my conditions and blood need..
let's see, i made a chart of both (Blood need & Chelation) and added the gathered info about Desferal's efficiency ... 1st i asked my doctor ,how much blood i need and after how many days ??? she told me " you should have Tx between 10-12 days ....
Okiey , now i have 10-12 days to encounter the iron that infused with blood and the stored as well ..
i used to have a Tx after 10-12 days and 250ml of blood ... = 250mg and 12 days
per 1000mg desferal chelate's 90mg iron ..and i was permitted to use only 1500mg/day.. that means i have to wear pump for 4 days... i hadn't think of making a plan for chelation with blood transfussion's schedule , at that time ...
i was using 3 vials a day , soo i made a chart , that mean's i was chelating 135mg of iron per chelation day ... when i got my S.Fe reports , i got to know that, this plan have failed, .. i re-calculated all the things and got that, it wasn't chelating even the incoming iron from Tx (250mg) .. here's the calculation 90mg iron x 3g DFO = 270mg .... . and i had 1 or 2 extra Tx during that time .... soo, this plan was failed and it wasn't a good plan ... slow decrease in iron and if you have an emergency and got to have an extra Tx you iron will jump-up high with this plan....
======================
after october 15 : when i got a reply that made easy to make/revise my plan
======================
And then Eponine Replied in a little more details : and very accurate info, it helped me to make the right plan ..Most Accurate ... i made my pla according to this one. ...
She Sent This info in thread on same Date i got my elvated S.Fe report , Thanx Alot Eponine , for a great Favor ....
15-oct-2008
An average unit of blood contains about 250ml of packed red cells ie 250 x 1.16 or 290 mg of iron. For example, a patient weighing 40 kg receiving 3 units a month will receive 3 x 12 x 290 = 10440mg/year = 28 mg/day of iron a day through blood transfusions.
Each molecule of DFO (Desferal) binds one atom of iron, forming a very stable complex. Theoretically, 1g of DFO can bind almost 90mg of iron. In reality, only 10% of the drug binds iron before excretion.
Then i revised the plan and made an agressive one : November to January and Januar to March , i have been on this plan, it is the most succesful plan....
regularized my Tx and "No" more extra Tx, if extra Tx then Extra Chelation as well :
250mg iron/Tx , 10-12 days gap per Tx .. i was perrescripted to take only Desferal 3 vials of 500mg/Day ...
Duration of per chelation 21hours A day , Desferals vial 3 (500mg) , and 5-6 between 2 Transfussions ( 10-12 days ) ..
Let's see the results by calculations :
3 Desferala x 6 Days = 18 vials ( between the gap of 2 Tx = 12 days )
18 vials of 500mg = 9g DFO
9g DFO = bind's 810mg iron
if you're getting 250mg iron per Tx ... I think, its enough and Great to chelate 810mg iron between 2 Transfussions ...
its better to wipe out all the iron before that make some damages to your boddy ..
[b[soo its good to work hard now and rest/relax for ever in your life , instead of working all the life ( trying to recall the name who said this ....[/b]
S.Fe in October 2008 : 3613 ng/ml
S.Fe in January 2008 : 2330 ng/ml
S.Fe in March 2009 : 2060 ng/m
Q : Why S.Fe came down on slower rate than previous two results in March-17's Reports ???
A : I have been very sick several times From January To march ,
5-12 Feb Stomach ache and 1 or 2 extra TX and "No" Chelation. during this time .( withing a few days after recovering to Stomach Ache ).i had Tx on 01-feb and back to chelation on 16-feb ...
23-Feb To March-01 Malaria and 1 extra Tx and "No" Chelation during this time. i started Chelation back after getting to normal ( withing a few days after recovering to Malaria ). i had Tx on 21-feb and back to chelation on 6-march ...
I hope this Will Help you ....
P.s : i m on Ferriprox500mg, 9 Tablets a Day as well ... and its played its significant role in decrease of S.Fe Levels ...
Best Regards
Take Care
Umair
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Umair,
You are really good at maths :biggrin you should resume your studies.Its good to see you are taking good care of your self,good luck with chelation.
Zaini.
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Umair, You are really good at maths you should resume your studies
After reading all these calculations, i had to drink an extra tea today. :crackup I think i need to take a day of to catch up with the calculation. :rofl
Good job buddy. And Zaini is right, i've been trying to convince you on this since ages. :waiting
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Hi Zaini and Tariq ,
Thank you for encouragement and having confidence in me that i can contineu studies, yeah i remebr Tariq bro that you tried very hard to convince me ,but :grin ....... these was the simple, easy and basic calculations , nothing more than it ... i think you people want to punish a few teacher of my area's school ... if i contineu my study wat kind of student i will be .. i m gona post a little hint like something please check ...
http://www.thalassemiapatientsandfriends.com/index.php?topic=2750.0
Best Regards
Take Care
Umair
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Hi buddies ,
Guess Wat ??, i mean guess wat i have to share with you this time ,,, yes its my S.fe Report .... here it is ..
My Latest S.Fe Report , done on 17-March-2009
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml 2060 ng/m
Latest S.Fe Report 25-April-2009
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml [bgcolor=#ffffff]1384 ng/ml[/bgcolor]
Hurraayeee .... althoug i skipped chelation for 3 Transfussions After getting results of S.fe last time ( 19 march ...) i restarted chelatio on 5th of this month ... i did 6/24 IV after that and then with pump and results are much better than previous one report .. i m soo HAPPY this time ..... Hurrayeee :part :stars .... i have collected my LFT report as well and i wil share that with you in another thread ...
:thankyou2 :thankyou2 :thankyou2
Edited : Thank you all for alot of encouragement and support , without that i think i wasn't going to start chelation again ..... Thanx alot for pusshing me forward to start and keep ON the Chelation ... Thanx Alot ...
A Special and BIG thanx to Andy and our moderetors ( how can i forget you Tariq bro , and all other member who encouraged me to the same cause by PMs , thanx alot budidies .. .....)
:thankyou2 :thankyou2 :thankyou2
Take Care
Umair
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:congrats Umair. What a difference one year can make when you work hard.
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:congrats am very happey for you but also as i said on another topic drinking tea is real helpfull to reduce the iron :coffee (TEA NOT COFFE)
khalifa
state of kuwait
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Hi Andy ,
Than for encouragement and support throughout the year , i m reallly thankful of you to the bottom of my heart ... :heartpink :heartpink :heartpink :thankyou2
===================
Hi Khalifa ,
Thanx for the advice buddy ,.. yeah, i m really a lover of all these drinks ( TEa, Coffee & Green Tea :coffee :laughspit :coffee ) , i love to drink these drinks and i drunk ( not that one form of drunk eg drunk fine $100 :teehee ) almost 3-4 cups of tea a day ... coffee , ocassionally just for style, you kow :grin .... thanx for seprating time to reply and encourage me ... i hope and pray that ABDUL-WAHAB is doing fine and not flirting to nurses at Dr.Lucarali's Hospital ( as you mentioned once ) .. keep an eye on him hahahaha just kidding :teehee :happydance :rotfl :rotfl ...
wish you and ABDUL-WAHAB ALL the Best of luck and health and everything ...
=============
Best Regards
Take Care
Umair
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Hey buddies,
i m planing to upload my new pics , bcoze all my relaties are saying i m looking cool and super heatlhy , and i saw yes complexion got fair enough ,,,, sooo , i will upload one here and an album at my msn live space , but only 1 condition , you people have to comment on that , done na ??. ..
Umair
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Hi Umair
:yaaaaaay :congrats. From 13000 to 1300 in one year. Maybe a 130 in less than a year now. May Allah reward your perseverance and patience.
take care
maha
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Umair,
Thats the determination every thal needs to live a great life,I am sure in a few months we will hear the same good news from one other member of this forum,and i am waiting for the news.
Congrats Umair,and keep it up. :hugfriend
Zaini.
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Maha & Zaini SISs :
Than you for the wishes and encouragement . its bcoze of your support and encouragment that i m here on this stage and the advice and then follow uup to make sure that i have started IV or not a bigl thanx to you all .... By the grace of ALLAH (GOD) that IV sessions worked alot for me and covered lots of iron ....
Zaini who is that member ??? ... may i know ?? ... i mean is he Jatin you're talking abt ??.. or anyone else ?? ..asking this just to know ... Thanx Alot Maha Sis for a super wish that i m desiring for to happen ( 130ng S.Fe ) .... hoping, praying and wishing the better health and succesful life for your kidZ as well ( alot better Health & Succssive life than mine ) ....
Best Regards
Take Care
Umair
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What can I say, Umair?
Am I right or am I right? In one year's time we'll start searching iron pills for you!!!
Keep up with the good work!!!
Lena.
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Hi Lena ,
yeah, you're right , i will need Iron pils really soon ( INSHA-ALLAH ) So please speed-up the search you've only a month left to search iron please ( i hope and wish ) .. otherwise i wil have to get an extra Tx to keep safe my-self from Iron Defiency :teehee ... :rotfl
Thanx alot for alerting earlier, and to advice to have an eye on iron pillz for any new sitaution ... Keep praying for me ... n you people are always in my prayerz ./...
Best Regards
Take Care
Umair
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My Treatment Plan on :
http://www.thalassemiapatientsandfriends.com/index.php?topic=1689.msg26441#msg26441
After That :
Hi ALL ,
here's my Treatment Plan Update's ..
As you people know that my S.FE level in January's Report was 2330ng ... After that my Haemo prescripted me Vit-C , the same dose of Desferal, i was on ...
then if you remember ( Especially Andy) i was having trouble as i suffered with Swollen feet condition and you and Moderators sugested me to start
IV Desferal as it was the sign/symptom Congestive Heart Failure (bcoze of Iron overloadat heart ) ... then i did 63 hours non-stop IV (for one time only)
4 vials a day and then back on Pump ... and then in start of February i had stomach ache and then in the end of February i had Malaria Fever and then
break to chelation from 25-Feb to 05-March during this 3-4 extra Transfussions and then back on chelation with pump with 4 vials of desferal a day (24hours)
till march 18th .... and then my S.Fe come's to 2060ng ....
========
after all that i visited my haemo and my haemo pprescripted me 4 vials ( i increased my dose from 3 to 4 vial according to my own plan (at the time, when my haemo prescripted me 3 vials a day ) ... and then she prescripted 4 vials a day i said to her " Ma'am i have tried this dose and its safe , if you wana increase then turn me on 5 " she said it could be toxic so play safe ....... bfore that i had tried 5 vials once .. soo i turned on 5 and it was my decission and it was according to 60-65mg/kg dose ( as i weigh 41kg at that time .).. i transfused 2 times from 18-march to 6-april and during this time no chelation at home ,.. after visitng my haemo i restarted chelation and turned on to 5vials a day dose , and first i started another IV desferal session for 24/6 but only for once and with 5vials a day.... after that i came back on pump again and 4-6 days out of 12 days between 2 Transfussions chelation plan and was on this till 22-april ( 2 days bfore S.Fe Tests).....
Note : i m on 4-6 days out of 12 days between 2 Transfussions results to get decreased iron on good rate , since 03-january ..... only difference is IV Sessions and increased dose of desferal ...
Best Regards
Take Care
Umair
-
Umair,
Good luck with the plan, you are already doing a wonderful job, and i am sure that everything will just go the way you want.
Umair, where are the photos, so excited to see them :wink
manal
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Manal Sis,
Thanx again for the wishes and ..... hummmmmm...... a lil wait for Pics i will copy them on Pc tonight ,.... :grin ...
Umair
-
Great work, Umair! I'm so proud of you! You've proved that with great dedication and hard work, anyone can bring their ferritin down to normal range (for thals). You're such an inspiration for myself and other thals! I always look up to you when it comes to Iron Chelation and fighting the iron overlaod!
:cheer :stars :love :congrats :yay :yaaaaaay :yay :congrats :love :stars :cheer
Best Regards,
SF
-
Looking forward to seeing your latest picture, soon, insha-Allah!!
-
Hi SF ,
Thanxx alot for the comment/reply/compliment ... Thank you for considering me as an inspiration and for encouraging my efforts to bring Fe Down to this level. i always need encouragement to you and all other members as well. ... :thankyou2 and Best of Luck for Chelation to you as well ...
====================
Dear ALL Members and Friendz,
ANOUNCEMETN :
Ahum..... Ahummm ......... Attention Please ...
Pic Has been posted there in gallery and its just a lil and half pic, i will upload a complete album on my MSN Space very soon INSHA-ALLAH, soo people who are in my list keep visitng my Space which is not created yet but will be created soon INSH-ALLAH .... please dont forget to leave comment okiey ...
====================
Best Regards
Take Care
Umair
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Umair,
You look great :wink Determination is shining in your face :biggrin.
Zaini.
-
Zain Sis,
Thanx alot Sis, :biggrin :shy :cloud9 :thankyou :thankyou2
Best Regards
Umair
Edited : if i failed to get 21 commetns within 21 days , then i will start thinking....... you know i will start thinking wat :rotfl :grin
-
if i failed to get 21 commetns within 21 days , then i will start thinking....... you know i will start thinking wat
You're too funny :rotfl. I hope we can help make it to 21 in 21 days! :happyyes I wonder where you got # 21 from? :huh You're not 21 years old, are you?
Thanks for wishing me the success with chelation too! I could definitely use some luck.. :wink
-
Hi SF,
yeah , i m not 21 years old, actually my last pic got 21 commetns ( its another thing that a few was my replies ) soo thats why i settled with 21 , okiey its a good idea that you bring , now ts 22 comments in 22 days .. i have increased the deadline ( and the no# of commetns as well ) ... :grin , try your best , and invite people to achieve that no# ( Note : this time i m not gnna count my replies in 22 comments soo 22 genuine comments needed and 1 comment per buddy will b counted , soo now its 22 different people and 22 comments :rotfl abhi dobara mat pochna :teehee ) ...
Best REgards
Take Care
Umair
-
i suddenly feel so different than what i was in the evening, can i post another one? :p
-
i suddenly feel so different than what i was in the evening, can i post another one? :p
You probably need some sleep, Tariq :p
Umair, acha baba, ab hum kuch nahin kahtay...
-
Hummm.................... Wow ,, 6 peoples Posted Comented there , Andy i m waiting for your buddy ...... .... hahaha ........ and SF , i said ( Dobara mat pochna ta'kay 22 sey bhi kahein barh na jaye ) :grin ...
i suddenly feel so different than what i was in the evening, can i post another one? :p
Wat's up buddy ?? didn't get its context ???/ wat's going there bhai ??? ...
Best Regards
Take Care
Umair
-
Hi All , here's a list of people who can help you to reach 22 .....
sarah, helenkol, abtaurus, Kathy11 and Bhatti Bhai , tell these people they will definitely help you to reach the No# 22 ... i know and hope they will come to comment .... you may send them PM .. Best of Luck khe..khe...khee..... :teehee .... last time i sent them all link to my pic and asked for comments except bhatti bhai ... now this time, this job is yours buddies .... hahaha Just kidding as usuall ...
Best Regards
Umair
-
Please do not even joke about randomly sending PMs to people. It is I who gets the complaints about PMs, so please always respect the privacy of other group members.
-
ok Andy ,
=======
Hi Buddies ,
dont send PMs to anyone , i do agree with Andy ....
Best Regards
Umair
-
Now that I have a minute I want to explain more about respecting the privacy of others. Many people join our group who are looking for information and help but do not necessarily want any social interaction with other members. A few months ago we had someone who joined our site and then asked to be deleted after she received PMs at another forum. Nothing happened here but just getting messages from someone she didn't know at this other forum, was enough to make her leave ours also. Many people want absolute privacy when they come here and we must always respect that. It is fine to message people you know and people who have made it clear that it is OK to message them, but for those who wish to remain completely private, we must respect that 100%.
Thanks for your cooperation and thanks for understanding that not everyone is as outgoing as some of us are. :biggrin
-
I agree with Andy that not all of us are out going ??? but you can PM me anytime :hugfriend
and I will try to reply asap.
Love to you all
-
suddenly feel so different than what i was in the evening, can i post another one? :p
Why not Tariq bhai , sure, you may , feel free .. khe.... khe.... khe....khe.... :teehee :teehee
==================
I agree with Andy that not all of us are out going ??? but you can PM me anytime :hugfriend
and I will try to reply asap.
and i do agree with Cheriean !! . :grin :scratch :flirty :teehee you can PM me or Add me on MSN, i will also reply ASAP :thumbsup ( then you'll get to know, how i take revenge to the people , m i right Tariq bhai ? ?? ?? :rotfl :teehee :rotfl :rotfl :rotfl ) ... yeah , dont worry you may add me :wink hahahah :teehee :happydance
Best Regards
Umair
-
I really thought you were 21yr! Are you 20yr?
Best wishes, Dore
-
Hi Dore ,
i turned to 22 in last january ( january 2009 this year ) ... for more details click on my nick and visit my profile , that is perfectly true, wat ever i mentioned in that ... :grin
Best Regards
Umair
-
arrrgghh you are older [& more smart than me] :rotfl :p only 3 months advantage LOL!!
I hope you can forgive me the thought of the wrong age.
Take care, Dore
I still feel horrible (pains are getting heavier and other parts of body) so it can take a while before we have a chat.
Owh, do you still play cricket with your brother?
-
Hi Dore ,
old & smart : i m Glad, bcoze you accepted that " I (umair) m smarter than you :grin " ...
Cricket : nope , bcoze of knee ache i wasn't able to play cricket and i have to rest so i put on IV Desferal to achieve both goals Rest & Chelation ..
Age : nope i m not gonna forgive :grin okiey, hummmm.... its okiey LOL hahaha just kiding ,,,, :teehee
yeah , i m elder than everyone who born after first half of january 1987 ....
okiey take care
Best Regards
Umair
-
You can not only beat with age and knowlegde, but also with chelation! ! Yes, your eyes are working perfectly. I decided to quit for a while. The conclusion so far is that it did not cause the pain. Now I want to see of it has any influence on the pain after tx. Possible not, but we must know it for sure. Pain: I take meds against peptic ulcer. Though we aren't sure that it is a peptic ..... . So I really hope you are able to show my ferritin how you really act like the bravest ferritin!!
Good luck!!!
Ps I hope the knee pain will soon be gone!!!!!!
-
Dore,
i hope you will get well soon and you will be feeling fine . i m sorry to hear abt pain you're going through ,
ulcer : i have suffered to it , i was on zantac for a long time , couple of years ago ( yeah , exactly when i was on wheelchair and a lil after tha also ) , my doc discused 2 possbilities for that Ironn & Sugar levels , i dont know where it was exactly bcoze nobody told me that , .... but it was in lower left side of my tummy , eyakh wat a bad time that was .... thanx for the wishes ...
knee ache : almost disapeared but i m stil carefull and on rest ....
Best Regards
Take Care
Umair
-
Zain Sis,
Thanx alot Sis, :biggrin :shy :cloud9 :thankyou :thankyou2
Best Regards
Umair
Edited : if i failed to get 21 commetns within 21 days , then i will start thinking....... you know i will start thinking wat :rotfl :grin
i m still on my stance ,
Q. wat i said ??
A. yep , i said i will start thinking ,
so, i m thinking now Hummmmmm :whistle ... .hummmmm :blush .... hummmm :waiting ..... hummm :scratch ... hummmmm :boredom .... hummmmmm .....
haha ha :teehee :crackup i m not gonna do something just only thinking :raspberries :happydance :laughspit :crackup :nana
Thanx for the lots of Comments
Best Regards
Umair
-
Hi All ,
Back to the toic of this threa :
i just removed the Canula (a kind of needle that used for IV injection for long period ) after having a complete week of IV desferal at home , yup straight 8 days 24 hour chelation . i administrated that at home after getting pricked the needle from a male nurse who work's at our Family Doctor's clinic ... here's the complete scene ...
at the night of friday 16 may i went tothe clinic of our faily doctor to get canula pricked from the old staff member of that clinic bcoze he is good at pricking canula ... i went there and after getting pricked the canula i came back to home and had 40 desferal vials in just 8 days ( a whole week ) at home , i administrated desferal on my own .. i kept the canula running 24 hours a day to avoid clots and blockage in the needle .. that's why canula was still in fine running condition when i decided to remove ( BTW, i removed that canula ) ... i never been admited in hospital for only having desferal/chelation ... i always managed that at home after getting pricked to nearest clinic ( our Family doc's clinic is near by our home ) .... i dont like to stay at hospital for only this hehe :teehee coze according to " an apple a day keep's doctor away, but if the doctor is cute forget the fruit " and there's no cute doctor there at the nearest hospitals :rotfl ... anywayz, it was 4th or 5th IV sessiion since january .. i started IV desferal in january when 1st Andy and a few other members sugested me to start IV desferal bcoze i was having the symptoms of Congestive Heart Failure .. i tried this and found that this method is very good at quickly lowering iron level .. you can read all the story abt previous sessions and Fe test results in previous posts of this thread ...
OKEY , now about how i managed it at home :
as i know that my daily Desferal dose is 5 vials a day , i kept the drip runing all the day on slow rate to infuse exactly 5 vials in exact 24 hours ,
e.g : i started chelation at 11 pm i will take only 5 vial untill 11pm next day and then when first day's dose got finished i attached the other drip for the next 24 hour's chelation ...
its easy and same nurses managed that at hospital , but for the people who have the history of alergy to the desferal i will recommend for them to don't try this at home ...
i hope i discussed the all aspects and explained everything abt administrating Desferal at home , if i missed something then please let me know i will try my best to answer that as well as i can ...
Feel free and dont hesitate to ask if you have any questions in your mind , do ask that if you have any ..
Note : i m saying this again , dont try this at home if you have a history of Allergy with desferal , and dont try this if you're not sure you can do it ... i never experienced any side-effect of desferal nor reaction of it , i think that's why it is fine for me to do this at home .. but again saying this IF you have any side-effect, allergy or reaction history to desferal then prefer to do this in provision of your healthcare provider ..
Best of luck for chelation to all of you :
Best Regards
Take Care
Umair
-
Well done Umair, when will you check your ferritin??
manal
-
Umair,
Thanks for an excellent post. This option makes IV desferal a possibility for many. As we have seen with you, this will reduce ferritin faster than anything and the convenience of being able to take the IV home allows for minimal interference in one's life. While this method may not be good for younger patients, it should be seen as a real option by those having trouble getting their ferritin down to safe levels.
-
Thank you for this very useful post Umair - I agree I think that older patients who have trouble lowering their iron levels will greatly benefit from this.
Nice to see you making so much progress. Good job, keep it up!
Sharmin
-
@ Manal, Andy & Sharmin ,
Thanx alot for the complements , yeah its easy for the old thals to do IV chelation at home if they thinki they can manage it ,, and this is wat that show's " older thal know almost more than doctors abt this kind of stuff and know better than the nurses how to manage needles and this kind of stuff" i believe that we (old thals) have spent all the life doing and experiencing these thing so we know better than the nurses ... we can do it better ...
"They succeed, because they think they can." (Virgil)
@ Manal,
i m plananing to test Fe level on tuesday, i wanted to give the gap between IV session and the tests thats why i planned that for tuesday ... i hope that results will be better but at the same time i know that wil be not superb as bocez i missed the whole week dose of Ferriprox during this ... but still hopefull it (IV Desferal) will show its effects ....
Best Regards
Umair
-
Umair,
very well done! Let's see your ferritin first, of course if I were you I would raise the desferal dosage to 6 vials per day. But let's wait for your ferritin and see what your doctor has to say.
Lena.
-
Lena,
Thanx for the encouragement and complement ... 6 vials a day :o its not exactly but nearly an extreme dose ( if i m not wrong ) .... i hope there will be good results and decreasing trend in test results .... Thanx alot for taking time to reply :) ... and keep searching for a good multi-vitamin with iron i will need that now ( i hope ) hahaha :teehee :grin ...
Best Regards
Umair
-
Umair,
I seem to have forgotten that your weight is 41 kgs, isn't it?
So according to that, you may be right for the desferal dosage.
Lena.
-
Umair,
Why did you miss the dose of ferriprox?
Zaini.
-
@ Lena,
I seem to have forgotten that your weight is 41 kgs, isn't it?
Exactly , my weight is 41kg .. and yeah according to that i m taking a lttle more than Average dose of desferal ( 50mg/kg x 41 = 2050mg and i m on 2500mg that is around 60mg/kg i choose 60mg/kg dose bcoze my weight is always hovering between 40-45 soo i thought 60mg/kg will be fine dose for me in that case ) ...
@ Zaini,
Why did you miss the dose of ferriprox?
Bcoze of being lazy to send demand draft to ICI Pakistan , in other words i sent draft when My Ferriprox was near to end ( almost end ) and when i sent demand draft and bfore getting new supply my old one got end soo i missed the dose for a few days ...
Lena and Zaini , Thanx alot both of you for taking time to reply ...
Best Regards
Umair
-
After a 10 day break I restarted Exjade today.I stopped because of the medical advice and the illness and I felt bad untill the day after transfusion. In other words: I was only able to enjoy the "freedom" for two days, and it was good! (I felt also quilty :shy)
I don't understand Umair's story. What is different than normally? Is it because IV goes slow over a long period? If it is that, then it's common to me. The last months of desferal I used one easypump over 48hours ( I guess) and then a new one. The only thing what hit your nerves is that during the first day you can not feel of the pump is still working.
I really wish that all of you were able to use an easypump aswell; they are indeed easy! :)
Dore
p.s. Umair, when will you check your fe again? How ofen do you do it? Every 3 months?
-
What's different about Umair is he is taking IV desferal, not subcutaneous. Right in the veins. It is more effective than subq and is a great help to anyone whose ferritin is so high like his was.
-
Dore,
Umair, when will you check your fe again? How ofen do you do it? Every 3 months?
humm , i never care of time period to check Fe , you can check this thread , in this thread all of my Test results are mentioned with Dates when they done ... when-ever i think that i have done enough chelation now i should have get tested the Fe , i goes for test .. but normally its after a month , aat-least after a month , sometimes its after more than 1 month and a few time 2-3 months as well ...
i hope i answered right :grin
And yes Andy is right , that is in vein ( IV = intra veinous ) .. and i do that straight 24 hours a day , for a few days but last 2 times it was for 8 day , ...
Umair
-
Hey Buddies ,
Guess Wat i have to share ????..... okiey.... okiey... i going to disclose it :
Last S.Fe Report 25-April-2009
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml [bgcolor=#ffffff]1384 ng/ml[/bgcolor]
Latest S.Fe Report 26-May-2009
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml [bgcolor=#ffffff]1092 ng/ml[/bgcolor]
As i mentioned a lil ago in this thread about missing the dose of Ferriprox for a week , and i also want to mention that i Transfused 3 times from 25-Arpil to 26-MAy and chelation was on hold , i have only 8 days straight IV desfeal for those three Transfusions ( and ofcourse 2 desferals with every blood transfussion on every Tx ), soo i think i weren't on extreme chelation for the last 30 days but yes IV desferal always make's the changes and leave's its marks in the shape of quick decrease in Fe ...
Tight your belts buddies and try to start IV desferal ...
[bgcolor=#9300ff]The Power is Yours ( Said , The Captain Planet everyday 3 O''clock on STN Tv Network :d :P hahhaha) [/bgcolor]
Now i have to go , i willshare LFT report very soon that is also better than bfore that was ..
Best REgards for you all for your treatments ..
Umair
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Umair,
S U P E R !!!!!
With this speed, by the end of summer your ferritin will reach 500!
Keep up!
I am happy for you!
Lena.
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Umair,
Congratulations, I am so very happy for you bud! That is amazing! What you have accomplished displays what a person can do if they follow the advise Andy and the others give on this site. You have turned your life around Umair - that is incredible! Your hard work and dedication are paying off! Your next result will be below 1000! Could you have imagined this a year ago?
Great job!
Sharmin
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Thats my man :thumbsup
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Hi all ,
Thanx alot for the complements , its all bcoze of your help, support and encouragement that you provided me throughout the year , i m sooooooo thankfull of you all ( ESpecially Andy ) , ...please keep encouraging and supporting me as you did in past i always need the ecnouragement and support from you all ....
i m more happy to see my LFT report than Fe bcoze SGPT in decreasing trend since i started Nigella and that is contiuosly decreasing , Thanx alot to all of you (Especially to Ambareen for sharing that usefull info about nigella and Andy to highlight that and to keep stressing on that) ... i will share those result in the other threads ...
@ Lena
Thanx alot for encouragment and super wishes , ...
please speed up the search for the multi-vitamin supplement with a litle amount of iron, i m sure next time i will b searching for that if u failed to do it by time ...
@ Sharmin
Thanx for the wishes, ecouragment, detailed reply and complements , yeah, i never had thought that my Fe will be within the green zone ... its something more than wonders and more than amazing .. once when Sahil reported that it take's 36 months to his Fe come below 1000 from 9000 , i thought that it is never possible for me to get on this mark within the year..
@ Tariq Bro ,
Hey bro, Thanx alot , please keep encouraging and supporting me as you did in past i always need the ecnouragement and support from you too , thanx alot for the time you spent online with me when-ever i was sticked with IV desferal that is the time when i need a friend like you to spend most of time to avoid get boring and keep complying with IV desferal , you helped me alot buddy ... thanx alot ... :thankyou2
Best Regards to you all
Umair
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Umair you are unbellievable, i am very proud of you and i am sure your family does too. You have shown us all how determination can pay back. By the way whenever i encourge anyone to chelate i usually tell them about you my friend, no words can describ how happy i am for you.
:clap
It is always easy to advice but very hard to follow this advice, you are an inspiration :yahoo
manal
:congrats
-
Umair,
When you started this thread, your ferritin was 9650. That was May 5 one year ago. I would say your progress has been amazing and also quite gratifying to all. Like you, I am also happier about your continued progress with your liver levels since starting natural methods. Thals have to take a lot of harsh drugs and it a great thing when a serious issue can be dealt with by using safe natural products. Getting your iron load under control does make it easier to restore liver health, so chelation also plays a role. I hope everyone who reads the posts here is beginning to understand that there is a lot a thal can do to better the health and the quality of life and that those who do follow the recommendations given here are seeing real improvements.
Umair, Sajid would be so proud of you.
-
Thanx Alot Manal , Thanx alot for the complement, yeah my family feel's proud too and they look's happy when they say " you are looking good and your color is fair now " ... Thank you for considering me as an insipiration but i thik there's alot of people here on this forum who r keeping their Fe levels within the normal range like Lena, Sahil and Smurfette and more ( look Smurfette , i haven't said again that you should be having iron overload in any organ :grin i remember that i said this once a long time ago :grin don't mind , i m just kidding ) .... Thank you all for being always there for me in every shape ( friend , inspiration, guide et..etc.. ).
:thankyou2 :thankyou2 :thankyou2
@ Andy,
Thanx alot Andy , but here i want to mention your contribution as well , i remember you were always there for me throughout this time ... the time when i was having heart symptoms you sugested the right way of chelation the IV desferal ... after that when i was on IV desferal for the very 1st time my 1st and my drip ended up earlier i was worried how i can take this small amount of that day's dose for 24, and it was 2-AM here at my side ( no doctor availability ), then i asked to you and your reply was rely relaxing for me .. and when i was over dosed of ferriprox it was again 2-AM and many more moments that's a big list i cant mention al those here ,... Thanx alot buddy for contineous support, help and right advice on time that was needed ...
Thanx a million buddy ... :)
:thankyou2 :thankyou2 :thankyou2
Andy, You reminded me that time again ... that was a coolest time i spent on internet ... May God Bless him ... i lost a true and kind friend .. it still feel's imposible to come out of the memories of that time ... i lost a true friend , i lost a true inspiration ... i still remember his voice, he was soo polite at speaking ... its still very difficult to believe that he isn't with us ... i cant write anymore, it make's me feeling very sad when-ever i look back at those days ... it feels like , GOD sent a person a blessing in shape of friend to me and then took him back to me to tell me the reality of life ... these memories make's me tearing everytime and i m unable to stop my tears to coming out to my eyes ......................................................... thats why i decided to answer this in the last .... bcoze i knew that after that i will be unable to answer anything or to type anymore ...
Thank you all from the deepest bottom of my heart and many many regards for you all ....
Take Care
Umair
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Latest S.Fe Report 26-May-2009
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml 1092 ng/ml
Awesome, Umair!! I'm sooo happy for you! I hope your liver and heart iron is also coming down this fast!
Best Regards,
SF
-
AOA SF,
Thanx alot for encouragement and for considering me an inspiration , as for liver and heart i cant say anything about their conditions exactly but i m on vit-c since january ( when-ever i putted ON the desferal ) so i think the stored iron is no more stored but it will take time to make a final & exact statement abt that ... Thanx alot For taking time to reply and encourage me :) :thankyou2 ..
Best Regards
Umair
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Umair,
Thats a fantastic news,really you are the symbol of hope for all those patients out there who think iron over load has ruined their lives.
By the way i loved captain planet when i was a kid :biggrin and now you are captain iron :biggrin.
Zaini.
-
Seriously,
What has been accomplished here (Umair and Panos recently) some major clinics are not even able to get these results. It is very impressive.
-
Sharmin,
I have to agree. The results that people are getting after following the recommendations here are very impressive. I hope the clinics and doctors can appreciate the help we are giving and will embrace our efforts.
-
@ Zaini,
Me ?? ? j/k ... Thanx alot for encouraging my efforts to decrease iron level... BTW, Captain planet was my favr8 too when i was a kid ;) ( it mean's Captain planet ruled alot and now he ishould reitre himself and he is old now :d ) ... when i started chelation i choose my name "IRON MAN" bcoze i was having alot of iron at that time , you can read those stories in first few posts of this thread ( Tariq bhai , Another story ;) , wat can i do yaar :dunno its un-controleable to me to stop writing stories or to stop making stories out of real incidents :rolleyes :dunno) ....
me hope , its something hard to digest hahahaah .. Thanx alot sis for taking time to reply this thread out of many threads ( i know there will b alot of threads in your un-read thread's list bcoze u r returning after a lil while ) .. :thakyou2
@ Sharmin ,
this is why i said Adult thals are bould have some dependable experience and knowledge as well doctors and nurses bcoze docs and nurses spent a part of their lives in this field a few year 3-4-5-6 but adult thals spent their whole lives in maanaging these things .. soo they have an edge over them not over experienced docs ( like mine , she is well know and experienced doc, and she has spent her 15 years for the well being of thals and she's a professor and head of the department of pediatrics and for those docs who have spent a big time in this medical dimension) but on new onez, yes they have an edge, bcoze new onez have to practice and patients have practiced alot in their lives... ,, the nurse at our Family doc's clinic always ask's me where i want to have canula pricked and to find clear and prominent vein . i always sugest's him 2 or 3 sites to choose one of them and then all things get done whe ever i plan t have IV desferal or when ever i had to have injections for stomach aches ...
@ Andy ,
i agree to all of you , right advice at right time work's very fine ... for example i was scared of using more than 3 desferal a day when 1st time i asked andy about that and when i got to know that i can take upto 8 then i decided to increase my dose , in mean time my doc increased my dose 3-4 but i had tested 5 desferal so since then i m on 5 desferal a day , and that maade a big difference in my reports ... soo complete knowledge works bettter than only prescriptions and instructions .. i dont want to forget my doc's efforts here and dont want to to end up all this without mentioning her efforts and wat she did for me , there is a big role of her in my god health , i m thnakful of her as well as she countered all of the complications in my case one by one instead of testing or experimenting new things on me ... i remember once i asked her to star exjade and desferal in combination at that time my SGPT ALt wasn't soo high but she replied " this study hasn't proven yet and i won't to test anything on you which is not proven yet " this is wat a good doctor is , she refused my request to start an experiment on me bcoze she won't to see her patient in trouble bcoze of any experiment ... there is a big contribution of her in it and i never forget her efforts , she is soo caring and soo kind , she refused my request to increase the dose upto 5 vials of desferal a day bcoze she won't to take risk on me , but it was me who love's to take risk hahhaha ... sometimes taking risk could benefit you and thats wat happened in my case ... i remember the happines on her face when she 1st saw a big decreae in fe in my 1st fe report ( from 900 to 3500 ) and afterward everytime she saw my reports , .. soo with this forum andy you all , there's is someone who played a big role in my success to get my fe down and she is my doc ... she was the one of the reason why i started this bcoze she warned me she will admit me in hospital if i dont start desferal at home , and at the same time she written a note on my prescription to admit me and told my fater to take him to the hospiatl then i promised her that i will do my best to have desferal regularly at home ... wat i want to say here is that, my doctor has also a big role in all this wat i have achieved ... i wanted to recognize her efforts and not to forget her at this moment of joy ... thats why i mentioned her efforts ...
Best Regards
Umair
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I think one of the most important things we can learn from Umair's experience over the past year is how much the quality of life can be improved by proper compliance. Thals do not need live lesser quality lives because of thal and they need to understand this very important fact. Knowing this can lead many thals to take far better care of themselves and have a much greater optimism about their futures. This is a message we need to emphasize over and over, as Umair has been doing with the local thals he knows. Don't allow yourself to believe that you should accept anything less from life than any non-thal would. A good life is there for you if you are willing to do the work.
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Well said Andy....
We should never expect anything less :bat and we can do it! :now
Umair is doing a great job. :congratsto you our buddy.
All of us are capable of great things. :hugfriend
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@ Andy,
:exactly you r right .. we can controle iron if we determine strongly to controle... when i started chelation i was neve thought i would get these results ... :agree to you buddy ...
@ Cheriean,
:thanx Cheriena for the complement and encouragment ... you're right we can do everything, and we should never expect anything less, this is wat keep you moving ahead always ... i hope you're doing fine and enjoying your life there .. and having good days and doing job as you wish to do ......
Best Regards
Take Care
Umair
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Congrats!!! Friday it's my turn. I don't expect great results. I had to quick and a blood transfusion. I restarted 4 days laters.
:biggrin I am glad for you & together we can do it.
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Best of Luck , Dore ... i hope that your Fe results will be better than mine. .. Thanx alot for encouragement , Yes we can... we can do it ... :goodluck
Best Regards
Umair
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Good luck Door, You will do great!
Umair thanks for your comment too. I am enjoying my life and loving my job with the children. I know nothing is easy and at times it can be a challenge. But I have learnt that nothing worthwhile ever comes easy. Hehe.
Keep up the wonderful job you are doing.
:hugfriend
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Note :
its my post Regarding to my an old post about long IV Desferal session .. this one :
http://www.thalassemiapatientsandfriends.com/index.php?topic=1689.msg28206#msg28206
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Hi ALL,
i just got to know that Canula must be change after 3-4 days , i dont know that just got to know , after that when i checked the site where i last time had the Cannnula on my left arm there is still a lil hardness under the skin ... vein is invisible .... when i putted off that iv and finished that 8 days long session iv was in running condition there was no clot but there was a lil redness on the site where Canula was pricked .. i dont know details why canula and side should be changed after 3-4 days but i m convinced to it , as it is a rule taht hospital follow's .... find whether u r going to believe it ot going to find out the reason, please let me know abt your opinions ...
Best Regards
Umair
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Note :
its my post Regarding to my an old post about long IV Desferal session .. this one :
http://www.thalassemiapatientsandfriends.com/index.php?topic=1689.msg28206#msg28206
-----------------------------------------------------------------
there is still a lil hardness under the skin ... vein is invisible .... when i putted off that iv and finished that 8 days long session iv was in running condition there was no clot but there was a lil redness on the site where Canula was pricked ..
Best Regards
Umair
Umair, when I was around 6 years I had subcutane (sp?) desferal through my belly. After a few weeks there was a lot of hardness which makes it me unable to bend.
I think it means that your body do not take all the desferal, but I dont know of that's true.
Because of that I had to stop with desferal. Maybe you could try to change the place from time to time so that parts of your skin has some time to recover. Just a thought.
Dore
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Dore,
long Chelation session make the skin hard and redish , i think it could bcoze of consecutive water flow in that place ( i mean, cosecutively drops after drops ) .. that make the site hard. .. i expereinced that hardness and redness on Sub-q site of chelation after long sessions of chelation , but i was intersted in getting down the Fe so i never think serioously abt that, n i m not gona think untill i get Fe under 500 no matter wat happens .... ut here i m talking abut IV desferal , that is a lil serious matter as there is vein (line) is involved in it, Doctor said that long IV seession on same site with same needle and prick could damage Vein (line), and i was tallking abt my experience that it has been 3 weeks since i never had any IV session but my skin of that site and that site is not back to normal ..... thats wat i wana say ....
Dore,
thanx for sharing your experience and making it easier for me to explain wat i wana say in more details...
Best Regards
Umair
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hi!
your ferritine report is gr8 :stars :party :congrats :congrats there are already perfect replies i have no words to encourage u..............but we can do every thing as all other members said.best wishes 4 u. :goodluck :coffee
take care
laiba
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Hi Laiba,
:thankyou2 , thanx alot for posting here ... yes we can ... i think you know about TSPs K2 Base camp expedition in which thals particpated as well ... so, yes we can do everything ( see who is saying this, a person who just back after creating alot of drama here on forum :grin ( feeling embarrassed :grin and grinning at the moment :grin )
Umair
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I started wednesday night. I mean restarted. My first dose is 375mg and i am planning to rise it up to 750mg at Saturday. Wednesday i wiil ask for the reports to see of I should bring it up to 1000. Be aware for more related posts. Got stupid side effects, like SLEEP and pain.
Its not the right place but within 2 weeks we hear of the big sister of 5yr old pkd patient is the donor. Her bmt is planned at the end of this year. At this moment suffers she from gall stones pain now. She is my little hero.
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Dore,
i hope everything will go fine at ur side :goodluck ....
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Hi All ,
here's another update :
Latest S.Fe Report 24-07-2009
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml [bgcolor=#ffffff]1299 ng/ml[/bgcolor]
it was just next day to the Transfusion day .. yup just next day to Tx i gave blood sample for this testt and it came 1299 ...
after that i got aother Tx on aug 5th aand then just a few hours bfore next Tx i gave sample for another Fe ... and here r the results ...
Latest S.Fe Report 19-08-2009
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml [bgcolor=#ffffff]776 ng/ml[/bgcolor]
following the treatment plan of my Dr.Joveria mannan which is 3 desferal only with Blood Tx , 10 hours on Tx day t 2 hour bfore tx and 8 hours after Tx ... and 9 tabs ferriprox ...
note: it is good in my case bcoze my fe was low when my doc turned me on low dose of Desferal , when my Fe was high i was on high doses .. .it mean's that once you get ride over Fe it wil bcome more easy to manage it in safe range .... GOOD luck to u all
:party :stars :party :stars :party :stars :party :stars :party :stars
Hurraraaaayyeyeyeee ..........................................................
Umair
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Umair,
Congratulations!!! You have set an amazing example for everyone! You have shown everyone one that it is possible to turn things around at any age, regardless of where you reside - with determination you can do anything! This is wonderful news, I am so happy for you! God bless.
Sharmin
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Umair,
You defeated Little Z in ferritin contest :wink congrats bro,it shows you can do anything,such as studying :biggrin .
Zaini.
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Umair,
You will find your ferritin is much easier to control now. Once chelation is part of your lifestyle, it gets so much easier. Congrats on the results of your hard work.
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@ Sharmin ,
Than Sis , yeah you can do everything if you think to do that with sincere heart ... i neve knew that i will reach to this no# this much earlier and without facing any side-effect of high doses of desferal .. its really and unbelieveable thing for me to see my report and to get me Fe from 9580 to under 1000 in just one years , and i thinnk its sumthing unbelievable, but if you sincerely/heartly think of getting sumthing and work hard to get that then GOD makes the path to your destiny so easy .... i dont even count how many times i felt down during this andhow many times get up and keep walking towards this destiny but finally i know that i got there where i wanted to be ... my experience in this says never think you can do it or not just think i have to try and keep trying till i succeed ..... Thanx GOD that He blessed me with success in it ...
@ Zaini
Zaini sis i would b happy if lil-z win to me in this contest, i would b more happy when i will see lil-z's Fe below mine and in normal range and to see her controle over Fe is better than mine :) you're doing a gr8 job at your end and i hope you hard work will result very soon ... i wish her to win in it and to see her Fe between 150 to 300 , which is the normal range ... study hmmm i think m too late to restart studies , bcoze i left in 5th grade and if i try to restart then its a really long time to cover ... mayb more than 5-6 years soo i think i missed the chance to go this way, but i will keep learning in my own way , through internet , reading about latest researches in my fields of interests instead of reading old sylabus books ... yeah, a degree speak louder than the study .... Thanx alot sis for your encouragement and reply that made me feel good .. thanx for the idea00 that made me think about new ways to learn ... yeah study really help and teach the way to live a succesfull life i agree to this but i think i m too late to think about starting studies again ... i remember a quote tariq bhai posted : if u wana do sumthing u will try to find a way , if u dont wana do sumthing u will try to find excuses :grin .. :)
@ Andy
yeah Andy , i think this treatment plan will b my final treatment plan for life time, but i think i would have to reduce desferal vial from 4 to 3 bcoze of the decrease i experienced with 4 vials dose 1299 to 776 is a big decrease in 3 weeks .. but i will continue this dose untill my Fe come's in normal range ( below 350 ) after that i will think abt it ... its a big relief to use desferal only for one day when you go for Tx , i m really happy to see this dose is working fine ... Thanx alot for encuragement and the guidenece you provided throughout the time i started agressive chelation and everytime i needed that ... :lovethissite bcoze i got lots of love , support , enouragement, help, lots of friends and advice at the mean time i needed .... thanx for being like a helping hand to get out of to the condition i was , Thanx is a tiny word for all that but i have only this word in my vocabulary :grin .... :ty
IN THE MEMORY OF SAJID !!!
today i m missing someone and a few tears jumped out to my eyez while mentioning abt that person , the person who encouraged me to post and not to worry abt language mistakes and anything else , a person bcoze of whom i joined this site bcoze for the ver first time i saw a fellow countrymen on a thal forum , who was a ray of hope to me bcoze i knew that i can talk to him in my mother language and ask him easily wat i wana ask , a person who taught me many things and always helped me on forum and behind the scene , a person with realy kind heart and nice behaviour , first person to whom i trusted on internet , a person who motivated me alot tostart agressive chelation , a realy kind and caring hearted person, who always explained wat i tried to say in my posts, at the time no one knew me on thalpal he was the only one who was in my contact list always available to help me out of trouble and to help me and tell me how i should ask this question ... Sajid , i miss you Dost ( buddy ) , i really miss you ...at this moment i m missing him alot bcoze he was the person who told me to give a try to my old and light weight pump that was easy to carry ,, ........ he was the person who gave me confidence to start asking questions on forum , when-ever i asked him to ask any question on my behalf bcoze i thought he will get more answer he always replied u wil also get same no# of replies so do post your quuestions , he was a great friend always helping always caring , the time when i dont like this diseas most was the time we lost Sajid , but at the same time it was the diseas bcoze of wat we met and we was togather ... he was my first thal friend on internet so i cant forget him at everymoment his memories will be with me , the way he helped me i cant forget ... he was the only person i started using internet regularly, ....
MAY HIS SOUL REST IN PEACE AND ALMIGHTY ALLAH GIVE HIM HIGH RANKS IN JANNAH ( JANAT UL FIRDOS ) AMEEN ....
Umair
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Congratulations Dear Umair, this unbelievable. I am sooooooooooo happy for you, way to gooooooooooo. You have really worked so hard but the result is just great. You are an inspiration for all of us
Manal
:congrats :congrats :bigparty :bigparty :yay :yay :yay
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Umair,
you were not the only one away from your laptop, away from your home.
I do not know if your tvs have shown the tragedy Greece is going through these days. A lot of fires going on in the northeast suburbs of Athens and some villages nearby and that's why I was obliged to leave home for two days because I live there, my house is close to these areas. Anyway, now things are getting smoother and I am back to congratulate Umair for his good work.
Keep on Umair, now it will be less difficult to control everything. Good work!
Lena.
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Manal & Lena ...
Thanx alot for the encouragement and support throughout the time , during this time, when-ever i felt down and think of stop chelation you encouraged me to not stop chelation and made me feel beter to keep the chelation On ,, thanx alot for being there to help me to make me feeel good and encourage me to keep making progress ... i think without the support of you and this forum it was impossible for me to keep chelation ON , yu people really helped me alot and made me believing that one day my Fe levels wil b in normal ranges .. i think without support of this forum and you people i wasn't able to get controled my Fe levels ... Thanx alot for your encouraging and kind words that made me feel better whenever i was down :) ....
@ Lena
Welcome back , i m sorry to hear wat's going on there and to wat u have been through a few days ago , i hope everything is fine now there, i think i heard of that fire that was out of controle ( if m not wrong ) but not sure that i heard or not ,, a few days ago when i was watching news i heard abt the fire incidence but dont remember where that was happening but i saw helicopter was trying to cope with fire , in that news clip .... welll , i was unable to take my Huge Desktop with me when i wnet on vaccations bcoze its a lil huge to take it where ever u go, otherwise i cant stay away to Computer :grin i m like :laughspit ...
Thanx alot to Manal n Lena for the encouragement :thankyou2
Best Regards
Umair :)
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You are welcome, Umair.
Always at your disposal.
Lena.
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hi!
congratulations :congrats :yay
laiba
take care
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:thankyou2 Laiba :) ......
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Lena, I saw those fires and I was wondering how you were doing. I'm so scared for those fires, and I only see them on tv. Be carefull & keep us up to date. I hope your family and friends are save and didn't lost their propetries. Take care xxx
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OH My Pears, I can not believe your report. I am so happy for you!!!!!!!!!!!! You does deserve an Olyimpic Golden Medaille!!!!!!!
Umair, didn't I tell you that you was gonna beat me?!?! This victory gives me the strength to continue my battle. I'm around 1500.
I'm sure your best friend is smiling from ear to ear to you from above. I so wish it was different.
You are an example for all of us!!!
Well done Earl Umair,
best wishes, happy smiles, warmly waves and huge hugs
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Lena,,
I hope things will resolve soon and the loss will be limited, please be cautious and take care. :hugfriend
Dore and Umair
I love your spirit, keep up the good work :hugfriend
manal
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Lena,
I hope that you are safe.
Sharmin
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Lena,
Fire is scary. It can travel so fast. I'm glad you're safe. Were many homes damaged? I haven't seen anything in the news here.
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Dore,
Thanx ya for the encouragement , hurrrayyee i won , but keep the chelation On one day your iron level will b lower than 500 ... wish u all the best , i hope n wish that your Fe will b under 500 with 1-2 months ... :goodluck ... About my best friend : yeah, mayb he will b smiling there but .... but i m missing him at this moment bcoze he encouraged me at every moment , he was the person who made me feel confident posting my question , it was never easy for me to join and start posting my questions n experience without his support, and now when i m at the health stage where i wanted to be , he's not here :( ...... without his support n encouragement, i dont think that i could stay here more than 2 months ... whenever i asked a question and discused that with him on msn he always encouraged me to post and discuss it the same way so more people take benefit to this ... and that was how i started here, and how i gain confidence to ask and discuss everything i wanted to know about ... so it make's me feel sad when ever i feel his absence ... yeah, he would b happy there , but he made me sad by going so far ... anywayz , its a part of life , that's wat called life , i will try not to be sad .. i will try to keep his memories as an inspiration to be like him , not as a reason to bcome sad ...
@ Manal
Thanx :grin :thankyou2
@ lena,
i watched this news last night in News bulletin according to that bulletin " fire fighters are working to stop fire " ... i hope this will end up soon and fire fighter wil controle fire bfore any damage to the properties of people and anyother serious damage ... please tke care and stay safe until this end up ... i hope this will end up soon .. sincere Regards to you and all people who r residing there near all this happening , May GOD keep safe to you all ... how is situation now ?? is that fire is in controle now ?? ..
Best Regards
Take Care
Umair
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Thank you guys for your concern,
The last days were frightful here. It is scary to start thinking to pack your valuables and leave everything else back, first of all your house. And that's what my husband and I did. We packed and left our home, not knowing whether we could come back and find it again. The situation was terrible,thank God now everything is ok. Well, not exactly everything. Many houses were burned down, properties, cars but above all so many trees, bushes, forests outside Athens that really provided us with oxygen and fresh air and stopped floods. The fire burned down an area of about 150.000 acres northeast of Athens. They say that the temperature is going to increase now during summers and there will be toxic particles of air in the atmosphere for very long now. God help us!
Again thank you all,
Lena.
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Thanx GOD, its nice to hear that everything is fine now, hope that everything will soon come to normal ....
Regards
Umair
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Lena,
I am so sorry to hear about what happened in your city,of course its scary,i am sorry for the loss of everyone there and i hope everything will return to normal soon.
Zaini.
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Thank you Zaini, thank you all. Things came back to normal, life came back to normal and now the State counts the loss.
Lena.
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Latest S.Fe Report 24-07-2009
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml [bgcolor=#ffffff]1299 ng/ml[/bgcolor]
Latest S.Fe Report 19-08-2009
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml [bgcolor=#ffffff]776 ng/ml[/bgcolor]
but after 776 it rose up once again and touched this level in october :
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml [bgcolor=#ffffff]1088 ng/ml[/bgcolor]
And my Recent Report :
Latest S.Fe Report 5-01-2010
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml [bgcolor=#ffffff]603 ng/ml[/bgcolor]
my personal Xperience : with less effort , less chelation , less desfeal ( almost no desferal , only with Tx ) ...
Huraayeeeee :)
Umair
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Congratulations Umair :clap :yahoo :clap :yahoo
I always mention you and your story when i talk about commitment, will and determination, truely you are an inspiration. I am soooooo proud of you and more proud to get to know a person like you
manal
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Umair,
That is wonderful news. Remember, now that your SF is low - when you chelate more iron is being removed from your organs so your health will improve much more now.
So so so happy and proud!
Sharmin
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Congratulations, Umair!
Good for you!
With less effort now you will maintain this level, but do not relax and leave yourself totally uncontrolled.
Lena.
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Umair,
You've done great and the several months with low ferritin means that you have your free iron under control and that the chelator can now do its main work of removing the iron from your organs. Over the next year or so, your organs will become clean and their function will improve. You are also already seeing how much easier it becomes to comply with treatment if you do comply and get your iron under control. Everything becomes easier. Watch your liver levels because you may find that chelation alone is helping to keep the hepatitis in check. If you do decide to try interferon, this will also work better with the lower iron load, giving the drug a much better chance to work.
You've done good, buddy. I am very proud of you and your efforts.
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Manal, Sharmin, Lena and Andy ,
Thank You ALL !! ...yeah, i will keep an observing eye on my Fe in future as well.. will not leave it uncontrolled .. will b more careful abt it in future :) .... now , i have only one issue that is still problematic , that is Diabetes .. will try to control that too ... always need ur encouragement and support ....
@ Andy,
i have given blood sample for hep-c RNA Quantitive and He-c Genotype tests and reports will issued on 15 and 23rd of january .. hoping and praying for the good :) ....
Umair
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Umair, :hugfriend
Thats the way to go my brother,we all are so proud of you :hugfriend .
Zaini.
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Congratulations!!!!! Ps it's official; you won the came ;) Mine crossed the 1000 on the wrong side...
Anyway, I forgot to tell you in our chat that I will attend the Dutch Hepatitis Conference. So let me know if you (or someone else) has any questions and I will ask them there for you! (it's at 23th Jan; you can also send me a private message)
Umair, :thumbs :thumbs :thumbs :thumbs :thumbs
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@ Zaini Sis,
Thank You , :) ... its all boze of encouragement and moral support of u and all other thalpals ... m feeling lucky to b a part of this family :happydance ....
Dorii ,
game is still on , work hard and u still have chances to win once again ... i wish to ask and know abt the hep but have no idea abt wat to ask and keep in mind mind bfore starting treatment of hepatitis, during and post treatment ... so , u may ask them abt the pre and post treatment precautions and te precautions/things to remeber during treatment .... Thanx ya for giving a chance to ask questions for my concerns :) ... wish u all the best of luck for the conferences u r going to attend :) ... take care ..
Umair
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Umair, whats your ferritin at the moment?
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Dore,
According to my last Fe Report my Fe was 603, it was done on january-05-2010 .... as it have been 3 months to that report,, so , i m willing to have another one .. tommorow I m going for Tx, then i wll wait for a week and then will go for Fe Test ....
@ Andy ,
wat's the best time to give sample for LFT ,, can u plz tell me the right time to give blood sample for LFT ????....
Best Regaards
Take Care
Umair
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Morning testing usually will result in lower LFT's.
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Andy,
did u mean before breakfast ?? fasting ?? or after a few hour to breakfast but a little before lunch ??? ....
Umair
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Liver function tests are most accurate after fasting, so first thing in the morning will give the truest results.
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Dear Andy
I m patient of major thalasssemia if u don’t mind I m asking some about some problems
Andy my iron level is 5530 ng/ml and I was using exjade tablets 20000mg per day from 16
months my weight is 56kg and my HCV is positive my ALT(SGPT) is 400 U/l
My doctor was advise me about Desferal and Ferriprox combination he says leave exjad and start this combination .
I was start my therapy butt my subcutaneous sites was swelling with deferral.
Before 2 year my subcutaneous therapy good is butt now i have very pain and very bad swelling the site is become red rashes .
Because my skin is very thick and fat I m using thalaset 10mm butt that is not working
Cane give me some advise about my subcutaneous problem.
Because I m very worry for my iron
Regards
Rehman Khan
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Hi Rehman,
Have you tried different sites for the needle like the thigh and upper arm? Changing the infusion site is important so the sites have time to heal. I also asked my experienced adviser and was told about a topical ointment called Thrombophob. It comes as a gel or cream and can be rubbed on the needle wound once the bleeding has stopped and it's sealed over (maybe 30 minutes). This will help to soften the skin. Using Emla cream before the needle insertion can also help to numb the area to make the needle pain less.
What is your Ferriprox dosage?
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Hi Andy
i was try all sites butt not working
my ferriprox dose is 11 tablets per day
and my sub_Q Desferal is 2.5G
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rehman jaani no problem .... lower ur desferal concentration .that is add 1g in 15 ml and let it go for 10hours instead of 7... inshALLAh u'll feel comfort ... and i wud like to tell u that i nearly ALWAYS hav swelling and reddish area on subq site.... and that lttle ithching brings me a joy :dunno ..anyhow no problem brother its just a minor thing..im used to it and hope u'll get it too ,,,also u can try distilled water of another company and always make sure u've mixed desferal completely in water by shaking it way tooo much....
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hi ya guys ...
gues wat i have to share ?? .. ofcourse my latest fe reports :P .... here it is ...
Latest S.Fe Report 05-January-2010
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml [bgcolor=#ffffff]603 ng/ml[/bgcolor]
Latest S.Fe Report 07-April-2010
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml [bgcolor=#ffffff]458.2 ng/ml[/bgcolor]
Hurayeeeeeeeeee !!! ..... :party :) ...
imy chelation plan since january 5th .. here it is ...
Ferriprox = 9 tablets a day
Desferal = 2 with Tx only
good thing is ... when ur iron will come's under 1000 then u'll find best results with less hard work .....
Best of luck to everyone for chelation :)
Umair
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Good for you, Umair! :yahoo
Nice job. May soon you reach 100 and join the club !!!
Lena.
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Umair,
It's great! You have gone from one of those looking for inspiration from others, to one who is now the inspiration for others. I am very proud of you. :biggrin
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umair
happy to sea you are result congratulation brother :hugfriend
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Wow Umair !! You did it !! :biggrin Congrats :hugfriend .
Zaini.
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Great going Umair. You should write an article about yourself to inspire and motivate others. :clap
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Lena, Andy, Rehman and Zaini & Maha sis ........
Thank you all for ur replies .. I'm also feeling very good to see my report.. if i look back in past when my Fe was 13002 it was looking imposible that one day it wud b withing ( almost within ) the normal range .. , i never had thought that of it .... its special blessings of almighty ALLAH (God) that m here with u , with a super gr8 Fe report.. not only Fe my LFT report is also almost withing normal range , i will post LFT report in another thread that is for liver ....... thanx to all of u who always been there for me , with me , to encourage me to keep going , to push me forward towards this goal , who i'll must say bared me n my long posts lolzzz :rotfl , who always helped me to stand-up and dust-off shoulders to start the journey again whenever i felt down ..... thank u alll .. i dont have enough words to finely say u guyz thanx as it must b ... i must want to say here that thalpal is my another home and its also my another thal center .... i cant forget the time i passed on this forum in my whole life ... i was living without friends , n life was soo meaningless without friends .. this is where i got/found true N sincere friends..................... hey .. hey..hey .. it doesn't mean that i'm leaving this forum :D , i will keep eating ur brain, guyz :P lolzz.... so , dont b happy that ur brains r safe .. i love to eat inteligent brains ,so, b ready :D ....
Take Care guyz
have a nice time
Best Regards
Umair :)
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Umair, I am really so happy and proud of you. Congratulations my friend :clap :clap :clap
manal
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Manal ,
Thanx for the encouragement .. encouragemtn is sumthing wat that pushed me forward to make it possible .... :) .... otherwise it was really hard to start and then continue with that chelation therapy .. the support , encouragement and everything u all sent my way that is really really appreciatable ...i m soo proud to know this forum and all the members of this forum .. .....
@ topic ,
Sajid :
i dont have words to write sumting abt him , i dont know how to xplain how much he helped me starting with pump .... he was the person who gave me break on this forum and pushed me forward to stick with this forum .. i m really missing him alot :( ..... May his soul Rest in peace and ALLAH (God) grant him high ranks in Jannat (heaven) , Ameen ...
Umair
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Hello Umair,
Congratulations on your Ferritin value.A big applause for your efforts with dedication .
Thats an amazing news that you brought down your serum ferritin from 13,000 to 400 approx.kuddo to your efforts .
God Bless you, Umair.
I need some advice from you ,Andy and other friends you were able to keep a check on their Ferritin levels.
My daughter samyuktha, 3.5 years old ,12.30 kg weight had her ferritin count at 2181 ng/ml on January 2010.She is on Asunra 200mg for more than a year now.Her Doctor had increased her Asunra dosage from 200 mg to 400mg/day in the month of January .There was an alarming rise in her SGPT and Creatinine levels with in 2 weeks.She decided to reduce the dosage back to 200mg.But still her SGPT level remained above the normal range.We took her LFT last week.The values were;
serum creatinine= 0.8 mgs/dl
SGOT= 88.0 U/L
SGPT= 110.0 U/L
To my utter dissappointment her Ferritin has jumped from 2181ng/ml to 2944.4 ng/ml .
I am so worried.I am planning to see her haematologist coming Monday with the reports.Samyuktha will be starting her schooling from June.I wanted her Ferritin to be below 1500 ng/ml . But....
Friends kindly help me in bringing down her ferritin values.what should i do?
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The dosage of Asunra is only half of what is needed, so the ferritin will not drop. Her serum creatinine is within normal range and this is the more important indicator when monitoring Asunta or Exjade. The sgpt and sgot are elevated but, not into a danger zone (5 times normal readings). What were her sgpt and sgot before you reduced the Asunra dosage? Has there been much change since the dose was lowered?
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excellent work omair buddy ... you r an ideal for those Fe ranges to me..i really envy you on that ... and you would be the first person who wud b crowned by me when i'll attain those levels just cuz of u ... luv u
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Samyuktha,
1st of all , Thank you very much :) ... it took time and effort but in the end it all the time and efforts turned into a good results ,...
Asunra/Exjade :
Andy has said all about that, i m not aware of that as much as Andy is , bcoze i never been on Exjade/Asunra .... i was on Combination therapy of Desferal and Ferriprox ... 9 tablets of Ferriprox and 4-5 desferal a day, 6-8 days between 2 transfusions ( 6-8 days out of 12 ) ... all details of my Chelation plan is available in this thread... as i have been on combination therapy and got amazing result in short time and that never been problamtic to me , no side effects , no neutropenia nothing else .. so to my point of view that is a better thing than anything else ... if ur daughter weight is around 30 kg then 20mg/kg = 600mg asunra .. according to that you're were way short a proper dose .... so , Andy is right .. but on the other hand the fact u mentioned in ur post :
She is on Asunra 200mg for more than a year now.[bgcolor=#FFFF00]Her Doctor had increased her Asunra dosage from 200 mg to 400mg/day in the month of January .There was an alarming rise in her SGPT and Creatinine levels with in 2 weeks[/bgcolor].
that is sumthing to think abt ... i think her LFT bfore increasing the dose and after reducing back the dose wud b helpful ...
(again.... its just my views on Asunra , i m not an experienced member i just know abt combination therapy bcoze i have been through that ... and in my view that is the best therapy if that suit's you)
Best Regards
Take Care
Umair
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Waleed,
Thanx , Buddy ... thanx alot .. i m waiting to b crowned ASAP , dear .. not bcoze i want to b crowned , just bcoze i want to hear from you that you got the same Fe report too as mine is .. eagerly waiting for that time , Yaar ( buddy ) ... i hope , wish , and pray that time come ASAP (Ameen) ... for me it is more nice feeling to know that someone started chelation just bcoze to know and see that its possible to get Fe within normal range doesn't matter how high it is, than of being crowned .... so, its a nice feeling for me to know that my effort to share everything related to my chelation plan and all other treatments is paying off :) .... best of luck ,Waleed .. :)
Umair
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Hi Andy,
when her Asunra was reduced from 300mg to 200 mg ,her SGPT reduced from 80 TO 75 U/L
her creatinine too reduced from 0.8 to o.5 mgs /dl .
Her Ferritin has been fluctuating between 2000 to 3000 ng/ml for the past 1 year with Asunra.
Till she was 2 years old she was getting Desferoxamine thro IV after transfusion.She gets transfusion once every 5 weeks.when she was having desferoxamine,there was no side effects though.I need your advice on what is good for my little angel.
Help me Andy bro...
Regards,
viji
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Viji,
what about ferriprox or kelfer? Has she ever been on ferriprox treatment?
High dosages of exjade are more possible to have side effects.It would be better to stick on low ones together with something else(ferriprox or desferal). What does the doctor say about a combination treatment?
Andy,
correct me if I am wrong...I have noticed that side effercts of exjade are more common in small kids instead of adults... is that the case?
Lena.
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Viji,
The good thing is that today's thals do have choices, and the knowledge that the choice made today does not have to be the permanent course of action. If you are uncomfortable with Asunra at this time, it may be best to consider a temporary switch to another chelator, or a combination of chelators, where the dosage of each is less than what would be required of one chelator, alone. Would your doctor be willing to try kelfer at this age? Daily kelfer and desferal a couple times per week could be tried to see how her ferritin level responds. Another possibility would be to take a month off from Asunra and replace it with desferal. After one month, try re-introducing Asunra, and see if the creatinine and liver values are more stable this time. Keep in mind that most patients do see a rise in these values while using Exjade, so don't be too alarmed. If creatinine goes 33% higher than normal, it must be stopped immediately. Small increases should not be alarming. The small change in SGPT is not significant at all, and you will see this type of difference in level just by testing at different times of day.
Lena, you bring up an interesting point and one that again goes to less than forthcoming nature of Novartis on the subject of side effects of Exjade. Officially, Exjade has shown no different results in young children than in adults, but the anecdotal evidence we hear seems to imply that young children do have more problems with Exjade, than do older patients. We have nothing official to go by, but caution may be wise.
Viji, my advice is to take a short break from Asunra, and replace it with desferal for one month. Also, talk to your doctor about kelfer and whether it would be appropriate at this age.
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Hi viji
My son is almost 4years. For almost 6 months his fe was hovering around 2000. We were witnessing a very slow drop to 1750ng/ml then his dose was increased to 500mg and the next month his reading was 2666ng/ml. The next month it dropped to 2000 again. The hematologist here is very cool about his fe readings, according to him this is expected in young children because even a slightest infection can elevate fe readings.
From my experience I have found that increasing the dose slowly works the best. For instance when his hema increased his dose from 400mg to 500mg I did not switch to 500 all of a sudden. For almost 6 weeks I was alternating between 400 and 500mg before I completely switched to 500mg. Perhaps that is why I have never had any problems with creatinine or LFT Alhumdulillah.
My son also has started school last week and is enjoying it thoroughly. All the very best for your little girl.
maha
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Dear Andy,Lena,Maha and all my well wishers in Thalpal.com :smileblue.
Thank you for the useful tips on Asunra.Today i met Samyuktha's Haematologist.She too said she is not that worried with her SGPT or creatinine but concerned with her Fe that is almost touching 3000 ng/ml.
She asked me to stop Asunra for time being and switch to another oral chelator Desirox 500mg /day(CIPLA COMPANY).I put forward the question of using desferal for which she answered crisply that it is of no use using desferal by IV line.Our Haematologist is a leading one in a famous group of hospitals in India.She is of course good but wants her word to be the last and doesnt like suggestion from the patient side.So i could not ask about Kelfer or Ferriprox.
She in turn asked me when we plan to do HLA matching.I said we have no plans to do BMT atleast for another 2 years but gave my word that HLA match shall be carried out in a couple of months.She said whether we plan to do BMT now or later,HLA is mandatory to know if it matches.In case HLA doesnt match,She will drop the idea of a possible BMT altogether and continue with transfusion and Oral Chelators for ever.She is stern in her talks.Regarding Fe level,she wants to switch to Desirox 500mg and if there is a jump in her creatinine and SGPT levels,she will discontinue with Desirox and go for usage of Pump.
I am truly shaken,Andy.I read in our thalpal thread about splitting the dose of Asunra.will that work for samyu.As of now she is having 200mg Asunra early in the morning.I am deeply worried about Samyu.Please advice Andy and dear friends.
Thanks in advance for your valuable advice.
Regards,
Viji
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Desirox and Asunra are the same drug, made by different manufacturers. Side effects can be expected to be the same. Desirox does cost less. IV desferal does work, but only for the amount of time it is used, so during transfusion only will have only a small effect. After reading the results of Zaini's trial of splitting the dose, I thought that this is something that you can try. Again, don't be alarmed by slight increases in the liver values. At levels 5 times normal, the drug is stopped, but this is unusual and your child is nowhere near this range. The creatinine must be watched, and as I said, if it gets close to 33% above normal, the drug must be stopped immediately.
Give splitting the dose a chance. I agree with the doctor that the ferritin needs to be addressed, and the side effects of the chelator have not been serious enough to warrant stopping the drug. And don't forget this extremely important tip for all Exjade users. Hydrate, hydrate, hydrate. Make sure she gets plenty of fluids daily. This is so important and often neglected.
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Hi Viji
Did your hema actually say 500mg? Isn`t this a way too high ie over 40mg/kg considering samyu weighs only 12kg .Close monitoring is needed when asunra dosage is over 30mg/kg.
maha
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Maha, thanks for pointing out the dosage. That dosage is the maximum that is given per kg, and is usually reserved for patients who are in serious danger from their iron load, and this is not the case here. I should point out that doctors who have used these high doses in patients say that the noted side effects were no worse than at the lower dosage. I do feel that in this situation, the dosage is not really justified, as there is no danger of a severe iron load at this stage. I would suggest cutting the current dose into two times daily and after a couple weeks, try moving to the next dosage level.
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Hi Andy,
Yes,our Haematologist mentioned desirox 500Mg /day.
Any how I am continuing with Asunra but on split dosage amounting to 300mg/day.I shall check her LFT next week and then increase the dosage as per your suggestion.
I dont know if all the Haematologist in India give such dosage to their patients without analysing all aspects. Anyone from our Thalpal Family,kindly suggest a good haematologist in India with whom i can have second opinion on Samyu's treatments.
Thanks a lot Andy,Maha and everyone out there with their valuable suggestions.From today i started giving her split dosage of Asunra.Keeping my fingers crossed till next week.
Thank you Friends,
Regards,
Viji
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Just for clarification for anyone who doesn't know this. Exjade, Asunra and Desirox are all the same drug (Deferasirox).
Viji, I hope the split dose helps. 500 mg is quite high for the weight of the child.
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Hello Umair,
Congratulations on your Ferritin value.A big applause for your efforts with dedication .
Thats an amazing news that you brought down your serum ferritin from 13,000 to 400 approx.kuddo to your efforts .u
God Bless you, Umair.
I need some advice from you ,Andy and other friends you were able to keep a check on their Ferritin levels.
My daughter samyuktha, 3.5 years old ,12.30 kg weight had her ferritin count at 2181 ng/ml on January 2010.She is on Asunra 200mg for more than a year now.Her Doctor had increased her Asunra dosage from 200 mg to 400mg/day in the month of January .There was an alarming rise in her SGPT and Creatinine levels with in 2 weeks.She decided to reduce the dosage back to 200mg.But still her SGPT level remained above the normal range.We took her LFT last week.The values were;
serum creatinine= 0.8 mgs/dl
SGOT= 88.0 U/L
SGPT= 110.0 U/L
To my utter dissappointment her Ferritin has jumped from 2181ng/ml to 2944.4 ng/ml .
I am so worried.I am planning to see her haematologist coming Monday with the reports.Samyuktha will be starting her schooling from June.I wanted her Ferritin to be below 1500 ng/ml . But....
Friends kindly help me in bringing down her ferritin values.what should i do?
its a matter for gr8 attention. My friends in lahore pakistan have stopped taking asunra because it raised their ferritin to great extent. in the start my friend was saying to have risen Fe from 3000- 6000 (even higher than that in other friends) and he said me a theory i cudnt get, that asunra first takes out iron stored in organs into blood stream and then excretes it...and that dialogue became a great laughter for all of us later on when that iron taken onto blood stream never excreted though hehehe and our hematologist has also advised to stop asunra . And it has led to other negative opinions that the product specifically produced and sold with such a lowcost as compared to its other versions in Europe, is fake and involves corruption. Asunra has lost its credibility in Pakistan.
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I would like to hear more from patients in Pakistan about Asunra use. The most common reason it doesn't lower the ferritin is that the dosage is too low. If it is not 30 mg/kg body weight, it is highly unlikely to lower the ferritin in patients with a serious iron load. Many patients have quit Exjade/Asunra/Desirox because they never reached the required dose. Doses as high as 40 mg/kg are sometimes used if the iron load is severe.
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Waleed,
You friend is quite right,Ausnra or Exjade does take out iron from the organs first,thats the reason why ferritin readings get high initially,and this initial period can be prolonged depending on patient's ferritin level before starting Asunra,because the higher the ferritin is,it means there is more iron stored in the organs,and Asunra will take more time taking it out,but as Andy said,for those who have severe iron overload,Asunra is not the best choice.
Its been over an year my daughter is on Asunra,and i have learnt that you need to be patient if you want results from Asunra,her ferriti has gone down a little bit,but thats because she reached her highest dose only for a while and then we had to reduce it coz of her high SGPT,Now that this issue is resolved Alhumdulillah,i am hoping we'll see a decline very soon.
Its hard to say that the med is fake and corrupted,is it even possible?
Zaini.
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This is exactly whats been on my mind for quite sometime now. Are these generic brands as good as the original? Its 18 months since Hassan`s been on Asunra. His dose has mostly been around 25mg/kg. From dec to date he has been on a 30mg/kg dose. 0n oct 2008 his ferritin was 2666 and on march 2010 its been 2000. During these 18 months twice his fe has reached nearly 3000ng/ml, the second time was on jan 2010 and the lowest on record was 1750ng/ml. I have thought of giving splitting the dose a try before discontinuing with ASUNRA and switching to other methods.
All said and done I feel Hassan absorbs more iron from the gut. Most kids fe reach 300 after four or five transfusions but Hassan`s ferritin was 325 before his first tx. I do give him tea with meals, no vit c during meal times but still his fe is stubborn.
We have a topic in the chelation corner Exjade works... From that day on I have been inching to write Asunra works too but so far no luck. Lets see who gets to write this first.
maha
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I think a mistake people make with the Exjade (Deferasirox) drugs, and Asunra is not a generic, as it is manufactured by Novartis India, while Desirox is made by Cipla and could be considered a generic, is expecting to see immediate results in the ferritin. From the very beginning, with the Exjade trial period, we have seen the same phenomenon over and over. Annie, from Hong Kong, was one of the first people I knew who participated in an Exjade trial. During the first year, her ferritin doubled. Her doctor told her not to be alarmed and that it would indeed come down. During her second year on Exjade, her ferritin level plummeted, just as her doctor had told her it would. We have to remember a very important fact. The iron in serum ferritin is sequestered by the body in the ferritin protein, and it can do no harm while it is isolated in the ferritin. Ferritin levels also do not necessarily correlate with the true iron load found in the organs. Ferritin levels also change rapidly during any bacterial or viral infection, as the body moves iron into the ferritin, so the iron is not readily available to feed the bacteria or virus. This is a normal mechanism, but it often alarms patients and parents, who would otherwise not be aware of the changes, except for the frequent ferritin testing. We have seen over and over, that Exjade apparently works to get iron out of the organs first, and that its effect on ferritin levels comes later. This is probably why the combination of Exjade and desferal is showing such good results. While Exjade is reducing tissue iron, desferal is mopping up the iron in the blood, that is found as ferritin and even free iron (the most dangerous iron).
I would highly recommend that no form of Deferasirox be stopped unless it has been used for a minimum of two years at a 30 mg/kg dose, unless the side effects are such that continuing the drug is not feasible. Patience is required, as is the recognition that maintenance doses will not lower the ferritin in iron loaded patients. As long as you know the source of your Deferasirox supply is legitimate and there is no possibility of it being a counterfeit drug, there is no reason to suspect the other forms of Deferasirox to be any less effective than Exjade itself. And those with very high ferritin levels should also consider a dose of up to 40 mg/kg daily. I would also suggest splitting the dose into two and taking it twice daily, if your results are slow to materialize, as further testing has shown that many patients are not getting 24 hour chelation from a once daily dose.
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Dear Andy and Dear Friends,
Since 1 week, as per your suggestion,i have split Samyu's Asunra dose to 3 times.100mg in the morning,100mg in the afternoon,100mg in the evening.She seems to be doing well.Inbetween she complained me of stomach pain while passing urine.I was shaken out of my wits.I was worried about her LFT values and had doubt whether she is having pain and discomfort because of that.She was found to have urinary infection and was on antibiotic syrup "Taxim" for 1 week .She was back to normalcy.Her LFT values 2 weeks back were;
serum creatinine= 0.8 mgs/dl
SGOT= 88.0 U/L
SGPT= 110.0 U/L.
After splitting the Asunra Dose ,i checked her SGPT and Creatinine in the early hours of the day as per Andy's advice.
Do you believe it friends,i was taken aback by the values.Her latest LFT values were;
serum creatinine= 0.6 mgs/dl
SGPT= 30.0 U/L .
I was more than surprised.If it was not for Andy and my dear friends in Thalpal, i would have remained as a timid mother.Thank you all friends.
Well regarding her Ferritin,i will check the values after a month and see what Asunra is doing in her.
But keeping in mind her previous records,Asunra has chelated Iron from her Body.
An year back her ferritin was 2950ng/ml.After 3 months when i rechecked it was 1330ng/ml.So the iron did decrease.
But after that it again increased till 2780ng/ml and after few months reduced to 2180ng/ml.
Now it has increased from 2180 ng/ml to 2940 ng/ml.I am keeping my fingers crossed if the values reduce in a couple of months to our relief.
Thank you once again dear friends.
Regards,
Viji :smiley
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:biggrin
I think we will make this a standard practice to advise dose splitting. I imagine Novartis will eventually follow suit as they hear more reports of the success of this method of using Exjade.
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Viji
Congratulations for the new results, I am really so happy for you, it seems that splitting the dose really works :wink Good luck
manal
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Hi viji
Very glad Samyu benifitted from dose splitting. :hugfriend
Little Aysam too had problems with his LFT. If only Mariam would sign in more regularly.
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Hi Dear Andy
You was advise me for Thrombophob cream butt I cant found.
I found Lasonil 40g Ointment Ingredient Heparinoid.
Im aslo sending you the web address pleas can you check
http://www.expresschemist.co.uk/product_2457_lasonil-40g.html
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Dear Andy
cane i use this
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Lasonil is o.k. I have also used this but only after the pump. I hope we mean the same product, Rehman.
Lena.
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Rehman,
Lasonil is a similar product with the same active ingredient, Heparin, which is a blood thinner. Try it and see if it helps.
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thanks a lot Lena and Andy for Reply
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its a matter for gr8 attention. My friends in lahore pakistan have stopped taking asunra because it raised their ferritin to great extent. in the start my friend was saying to have risen Fe from 3000- 6000 (even higher than that in other friends) and he said me a theory i cudnt get, that asunra first takes out iron stored in organs into blood stream and then excretes it...and that dialogue became a great laughter for all of us later on when that iron taken onto blood stream never excreted though hehehe and our hematologist has also advised to stop asunra . And it has led to other negative opinions that the product specifically produced and sold with such a lowcost as compared to its other versions in Europe, is fake and involves corruption. Asunra has lost its credibility in Pakistan.
What your friend said is correct. Exjade/Asunra does elevate ferritin in initial stages. Prolong use of exjade will bring the ferritin levels down.
Andy,
Splitting of the exjade dose is helping a lot of patients in Canada. Little Miss A. is eating again and is quite happy with her exjade schedule. The last ferritin came as 300 for Little Miss A, and she have stopped exjade for three months.
Just an update with Little Miss A. The Bone Mass Density (BMD) test is tomorrow and ferriscan is scheduled for third week of May. The hospital has T2* now and is doing the test on few patients.
Also, Hospital for sick children has arranged a information seminar for the transfused dependent patients on May 8, 2010. I am planning to attend and will update the forum if there is any new information.
Thanks,
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Hi Canadian Family,
I am really glad to hear about Little Miss A's ferritin,good luck with all the tests :goodluck .
Zaini.
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Hello friends
I m feeling weakness with swimming when I take feriprox butt I was stop feriprox for 3 days I m feeling good . cane you tell me friends what happen is this .
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Rehman,
what is your weight and how many ferriprox per day?
Lena
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hello Lena
My weight is 58 kg and I’m taking 11 tablets of feriprox per tablet is 500 Mg .
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rehman
The common dose of ferriprox is 75mg per kilo. So according to your weight, it should be 8.5 tablets per day.
In some cases with high iron overload, it can be taken up to 100mg per kilo, which in your case will be around 11.5 tablets daily.
My opinion, is to stick to the common dose, may be your body will tolerate it in a better way
good luck
manal
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Hello manal
manal thanks for reply my Iron level ii 45000
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Rehman,
Manal is right. You are taking the high ferriprox dosage probably due to your iron overload.
Do you take any desferal?
Lena
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Hello manal
manal thanks for reply my Iron level ii 45000
I think there is an extra zero in it ? isn't it? :huh
Zaini.
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ops i write extra zero with my iron level my real Is 4500 .
Manal so im become weak with swimming
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yes Manal im taking 2.5G of Desfelar 6 days in weak .
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rehman
How about sticking to the low dose of ferriprox and trying to administer desferal via IV to help decrease ferritin rapidly
manal
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Rehman,
Is the weakness in your joints or your muscles?
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Andy.
I have weakness in my muscles .
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Rehma,
i think that is nothing related with Ferriprox .. as you me on phone that you just have started swimming and you're doing 8 laps in 2 hours and i told you that is too much to begin with .. as i told you on phone (as we had a talk just after your this one post ) that to start with 2-4 laps then rest for half an hour and then do 2 more laps and then go off to swimming and slightly increase No# of laps day-by-day ... i think reason of feeling weakness is due to doing 8 laps in beggning ... so, start with less no# of laps and slightly increase the no# of lapse ... i remember once when i went to see a phsyio therapist he told me some exercises and instructed/said me to do every step five times in beggning but once you get used to it start increasing the no# of every step ... (for example if he told me to pull up hand 5 times for a few second, he told me to increase it to 5 times then after a few days 7 times then after a days 8 )...
i hope answered the question and it will b helpful for you ..... i think , IF Ferriprox have any effect in your case that would only joint tired/weakness/pain not muscles ( i mean to say i dont think ferriprox could have any effect on muscles ) .... i think that muscle pain is only due to doing TOO much swimming/exercise in the beggining ....
Best Regards
Take Care
Umair
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I agree with Umair. Pace yourself. Don't try to much too soon.
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umair bhai thanks a lot today i was swime 4 laps im fealing good .
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Andy
Thanks a lot i m fealing better with that advise .
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Hi Rhman,
Your welcome .. :)
umair
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Hi Dear Andy
I have alwayz bleeding from Nose My Complete Blood count is normal .
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Hi Rehman,
Nose bleeds can be caused by different things. Sometimes it's due to low platelets and a vitamin K shot may be given. We have a thread about this at http://www.thalassemiapatientsandfriends.com/index.php?topic=1308.msg10486#msg10486
A good article about nose bleeds can be seen at http://www.nlm.nih.gov/medlineplus/ency/article/003106.htm
You may find some ideas about the causes and treatment there.
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thanks a lot Andy
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Hi Dear Andy
how cane i store my Desferal .
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Desferal should be stored at below 25 C, so if your place has air conditioning, it doesn't need any special care. If your place is regularly warmer than that, you should store it in the refrigerator.
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thanks a lot andy .
Andy i have pain in body .
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Hi,
I remember you mentioning you have osteo,the pain probably is the result of osteo,if its in your joints or bones,have you discussed it with your doctor?
Zaini,
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Dear Andy
I’m on Ferriprox + Desferal combination I’m taking 6000 mg Feriprox and 3 Grams of Desferal .
When I use only ferripox my urine is very dark orange color and I use with desferal then my urine color is light orange. I’m taking vitamin C 30 minutes befor desferal infusion pump .
Im start combination before 4 months butt before my urine color is dark orang and in now days my urine color is not dark with Desferal + Ferriprox . so cane you tell me what happen .
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Rehman,
As your ferritin drops, your urine color won't be so dark anymore and that is good. It is the first step towards iron reduction. Now as you chelate, the chelation drug will be more effective in your organs since it doesn't have so much blood iron to remove. Stay on your chelation program. You are making good progress.
I am trying to access the Vitabiotics website but am getting a virus warning, so the site may have been attacked. Once it is cleared up, I can check on the various Osteocare products.
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hi
i can exactly told u what happens with ur urine-color.
the color in urine when u take both chelators shows
only the color of the desferal chelation....
this is because the desferal has bigger molekules then the ferriprox....
thats happend to me too and i asked about it....
its because the desferal is dominate in size.....
u will see if u only take ferriprox alone....
the darkness will comes back.....
by the way... i am doing fine and my ferritin stays in the 600 ranges....
good luck rehman and keep handling in combine-therapie.
panos
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Thanks a Lot Andy and Ball for you reply.
i will try my best . from now i m not wory for my chelation and Urine.
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Good attitude, Rehman. Faithful compliance will have its rewards.
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Dear Andy
thanks Again.
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Hello Dear Andy
my chest is come out
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I don't know of this is the right place.
Ferritin still goes up by Exjade of 750mg. I have now increase it to 1125mg. I hope it won't take me another 8 - 9 months to get it down. Any help would be apericiated (sp?)
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hi ya guys ...
gues wat i have to share ?? .. ofcourse my latest fe reports :P .... here it is ...
Latest S.Fe Report 05-January-2010
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml [bgcolor=#ffffff]603 ng/ml[/bgcolor]
Latest S.Fe Report 07-April-2010
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml [bgcolor=#ffffff]458.2 ng/ml[/bgcolor]
imy chelation plan since 05-January-2010 uptil 30-Nov-2010 .. ...
Ferriprox = 9 tablets a day :medicine
Desferal = 2 with Tx only
beside the few desferal wastege scene during transfusions , and a few week gaps of Ferriprox ...
here's my latest S.Ferritin Report Done on 30-11-2010
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml [bgcolor=#ffeb00]590.1ng/ml[/bgcolor][/quote]
hurraayyeeee ,,,,, :happydance :yahoo :grin :thumbsup :party :yay
:nana to desferal at home n pump
:coffee to Tea n Coffee :P :laughspit
:thumbs :thumbup :hi5boys :hiyaboy :thankyou2 :ty :love for U all .. n :grouphug :high5
and :clap :getwell :clapcheerboy :thumbs :thumbup for all those who r strugling to bring Fe down and also for those who have done this job :P .. .
Best Regards
Take Care
Umair
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Umair,
This is wonderful news!! I wish you ongoing success! You look amazing and well in your pictures! God bless
Sharmin
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Umair you are on thr right track buddy,keep going and you'll hit the normal levels pretty soon InshAllah :hugfriend .
Zaini.
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Good for you, Umair ! Good for you! :yes :yes
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this is wonderful news but may i please ask something...
your level went from 458.2 ng/ml to 590.1ng/ml, does that mean something?
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Good question, love and prayers, and I am sure others would want an explanation. The difference is slight in measured ferritin and we know that ferritin is not a stable count, as it is affected by other conditions in the body. The real significance is that Umair is maintaining a stable ferritin level with a much reduced chelation regimen. Not long ago, our nice friend was taking IV desferal and kelfer. He is now on a normal chelation program and the fact that he is maintaining a stable ferritin level, shows us that the hard work is now done. Umair can now maintain a level, rather than aggressively fight to reach that level.
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Congratulations Umair :biggrin :hugfriend
manal
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salams umair.
congrats to u. v happy to see ur good news. Masha Allah.
shaziya
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Congratulations Umair!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! :cheer :jumping :thumbsup
I plan to restart this tuesday..... I will restart or open a new motivitation topic. I need it.
I am so happy for you. My apologies I read it only now!
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Sharmin , Zaini ,, Lena , Manal N Shaziya ,
:thankyou2 Alll ,,
love n Prayers ,
yeah ,, that means i missed Ferriprox for more than a month mayb for 40 days (time to time since last january to November in whole 9-10 months ,, :D ) .... actuly 9 tabs a day and 2 desferal was gr8 combination it was doing its job really well and it was slowly lowering down Ferritin as i needed at that time ,, but unfortunately i missed a few days of ferriprox doses that played its role in all that .,,,, n yeah a few time Desferal Wastage Scene putted its share as well ( as a few oh thal pals knows that sumwhere in mayb Auguest 2010 one of my status update on FAceboo was " i wasted Desferal for the very 1st time in last 2-3 years :( due to Fever " ...... then in january 2011 when i went to see my doc she added 1 more Desferal after seeing this Hike in Ferritin level ,, so i'm sure it will b much better in control than it was ,,, i hope my next Fe Report will b much better and encouragin than the last Fe report :) ....
Andy ,
absolutely right ,,, hard work is done now ,, its time to feel relaxed and have chill pill and enjou the life with less work ( no more hard work ) ... .. ;) .. .
Dori ,
Thanx ya ,,, its ok ,, its better to b late than never ... lolzz...
best Regards
take Care
Umair
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:thumbup Great job, Umair! Motivates me to be more discipline in taking my iron chelators... Thx! :letsgo
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Nat,
it always feels good to know that my achievement is inspiring many others to do the same and come back in life .. its not such a hard job ,, you must b self determined and commited to your treatment plan and then things will start turing in your favour ,,,, its easy to get ride of Ferritin but for that ,, u must b well determined to do that ,, ,to make that possible for your self .... a little hard work now will make your life easy forever ,,,, as it happened in my case ,,,, now i'm off to desferal at home and thats a big relief for me .... :) wish you all the best of luck !!!... :)
Best Wishes &
Best Regards
Take Care
Umair
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in real , i think And Feel that,,,,, Now my Achievement is paying off :) ...
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Guess wat wud b my Ferritin Level According to my Latest S.Ferriting Report ???
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Have you been staying compliant?
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Andy ,
yeah ,, till last january to this novvember i was on 2 desferal with Tx and 9 tabs Ferriprox a day .... but after seeing the a little rise in my S.Fe level my heamotologist prescripted 3 desferal with tx and 9 tabs Ferriprox a day ,,, so since then i m on 3 desferal with tx and 9 tabs ferriprox a day .... but i were a little bit careless and irregular with Ferriprox ... :\ ...
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Latest S.Fe Report 05-January-2010
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml [bgcolor=#ffffff]603 ng/ml[/bgcolor]
Latest S.Fe Report 07-April-2010
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml [bgcolor=#ffffff]458.2 ng/ml[/bgcolor]
imy chelation plan since 05-January-2010 uptil 30-Nov-2010 .. ...
Ferriprox = 9 tablets a day :medicine
Desferal = 2 with Tx only
beside the few desferal wastege scene during transfusions , and a few week gaps of Ferriprox ...
here's my latest S.Ferritin Report Done on 30-11-2010
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml [bgcolor=#ffeb00]590.1ng/ml[/bgcolor]
after nov-30-2010 my doc changed the treatment a little bit and prescripted me :
Ferriprox = 9 tablets a day :medicine
Desferal = 3 with Tx only
here is the result of my latest S.Fe report done on 15-Jun-2011 :
Normal range (for my age) Result
Serum Ferritin 30 - 400 ng/ ml [bgcolor=#ffeb00]252ng/ml[/bgcolor][/quote]
hurraayyeeee ,,,,, :happydance :yahoo :grin :thumbsup :party :yay
:nana to desferal at home n pump
:coffee to Tea n Coffee :P :laughspit
:thumbs :thumbup :hi5boys :hiyaboy :thankyou2 :ty :love for U all .. n :grouphug :high5
and :clap :getwell :clapcheerboy :thumbs :thumbup for all those who r strugling to bring Fe down and also for those who have done this job :P .. .
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Umair,
This is such wonderful news! You have done such an excellent job bringing your ferritin down! And what an example you have set for others Umair! If you can bring your levels down from where you were at - others can do it too!!! Congratulations on what you have done for yourself and how you have encouraged others! What you have done represents what this site is all about - what the most important factor in thalassemia care is!
Perhaps next time your ferritin will be <100ng/ml!
:cheer,
Sharmin
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Sharmin ,
thanx ,, its all bcoze of u all ,,, u guyz encouraged me to keep going ,, u guys made me stand-up again whenever i fell .. its bcoze of every kidn of support by u guys and especialy by ANDY ,,, who were always there for me to help me and to encourage me ,, to give me hope to keep strugling ,,, and he is stil always there to help me and others .. .. it was impossible to get on this mark without the encouragement and support of ANDy , You ,, Zaini ,, Manal and all otherz .... so ,, ,,THAK YOU ALL FOR BEEN THERE FOR ME TO ENCOURAGE ME AND TO SUPPORT ME IN THE BATTLE AGAINST THALASSEMIA AND IRON ... :) ..
:thankyou :thankyou2 :thankyou
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@ Andy , Sharmin , Zaini , Manal and Entire THALPAL Family
(http://c.universalscraps.com/files/en/thank.you/thank_you_082.png)
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Umair,
Thanks for the compliment. The difference for you now is that you are educated about what you need to do and you have the will to do it. Your determination is an inspiration for anyone struggling with chelation. It can be done if you will it.
I am very proud of you.
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Umair,
Is your HCV also under control and are you still using Nigella seeds? I am asking because another member is trying to decide if interferon should be used again.
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Andy ,
i never been tested for HCV quantitive test after that time last year ,, in which that was negative ,... im' not using nigela but i'll start taking that again ... :) ... ,, i'm going to post my latest LFT reports as well, in another thread .. :) ..
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Hey Brother,believe me it was all you who did that,and the Grace of Allah :yes
We love you too and we are here for you always,even when you get married :rotfl :rotfl :rotfl
:wink
Zaini.
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It is so great Umair!
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Umair, my dear friend..... CONGRATULATIONS...I know it is a bit late, but so sorry I was not online for a while. Umair you are an inspiration for true determination and you have showed us all how powerful is the human will. I am so happy for you my friend and so proud that I know a person like you
Manal
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I just saw your post, Umair.
CONGRATULATIONS, my friend. You did it! Stay within this range and everything will be fine.
Lena
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Dear Andy and Dear Friends,
Since 1 week, as per your suggestion,i have split Samyu's Asunra dose to 3 times.100mg in the morning,100mg in the afternoon,100mg in the evening.She seems to be doing well.Inbetween she complained me of stomach pain while passing urine.I was shaken out of my wits.I was worried about her LFT values and had doubt whether she is having pain and discomfort because of that.She was found to have urinary infection and was on antibiotic syrup "Taxim" for 1 week .She was back to normalcy.Her LFT values 2 weeks back were;
serum creatinine= 0.8 mgs/dl
SGOT= 88.0 U/L
SGPT= 110.0 U/L.
After splitting the Asunra Dose ,i checked her SGPT and Creatinine in the early hours of the day as per Andy's advice.
Do you believe it friends,i was taken aback by the values.Her latest LFT values were;
serum creatinine= 0.6 mgs/dl
SGPT= 30.0 U/L .
I was more than surprised.If it was not for Andy and my dear friends in Thalpal, i would have remained as a timid mother.Thank you all friends.
Well regarding her Ferritin,i will check the values after a month and see what Asunra is doing in her.
But keeping in mind her previous records,Asunra has chelated Iron from her Body.
An year back her ferritin was 2950ng/ml.After 3 months when i rechecked it was 1330ng/ml.So the iron did decrease.
But after that it again increased till 2780ng/ml and after few months reduced to 2180ng/ml.
Now it has increased from 2180 ng/ml to 2940 ng/ml.I am keeping my fingers crossed if the values reduce in a couple of months to our relief.
Thank you once again dear friends.
Regards,
Viji :smiley
Hi Samyuktha,
We did not hear any further news from your side. Did splitting dose helped? Did FE levels came down? I'm excited to hear, please let me know.
I've started taking the split doses from today. 800 mcg in morning and 400 mcg in the evening. Lets hope for the best.
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Zaini ,
sis, it wasn't only me who made this happen ... i must say, this journey was impossible without the support and encouragement of you all :) ....
Dori,
thanx ya Dori :) ..
Manal,
1st of all , no need to feel sorry, Manal ... beleive me its an honour for me to know you all and being a part of this forum ..
Umair you are an inspiration for true determination and you have showed us all how powerful is the human will.
yeah its what i use to say other thals and its something written below my Display Picture ..
If I Can, Why Not You??... If I Can U TOO !!!...
Lena,
thank u, Lena ... yeah i m trying my level's best to keep everything fine and within the normal ranges :) ...
@ Alll ,,
so sorry guys for being soo late to reply ... i dont have any excuse for this ... :(