Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: komal on December 30, 2009, 01:14:11 PM
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HI,
My ferritin level is very high am using ASUNRA 1000mg per day.It only remove iron from organs.I am scared how to remove iron from liver and heart??Even dont know how much iron deposited there as Ferriscane is not available here. :(.Kindly guide me which combination is more effective???
komal
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Hi, I think its good to take ferriprox, it removes from heart and from all body.
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Hi Komal,
I mentioned this in my PM to you, but I would like to bring it up for the benefit of all. Doses of Exjade (Asunra) have been shown to be safe up to 40 mg/kg daily. This high dose is normally used only with those whose ferritin is far too high, as is the case here. With Komal's weight, he could be taking 1440 mg daily. This would clear the iron faster. Of course, this must be done with a doctor's approval and under a doctor's supervision.
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Hi Komal,
what is your ferritin level right now? I'm just asking to see which chelation therapy would be better in your case.
Lena.
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He's higher than 10,000.
The Standard of Care Guidelines have this to say for high ferritin and Exjade.
After starting therapy, increase the
dose by 5 to 10 mg/kg every three to six months based
on iron stores. A dose of 20 mg/kg per day is effective in
establishing negative iron balance in some patients.
However, a higher dose of 30 to 35 mg/kg per day is
usually required to establish negative iron balance.The dose may be
increased to 30 mg/kg per day, and in certain cases, to
40 mg/kg per day.
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Andy,
I would suggest aggressive desferal-ferriprox combination therapy for Komal, but since his ferritin is so high I imagine he does not comply and that's why he is on Asunra.
Komal,
you must rush with chelation...even get an IV desferal in the hospital. What does your doctor say?
Lena.
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Lena,
I think it may have been in a PM, but Komal mentioned that other chelators have not suited him, so I think raising the Asunra dose is the best way to proceed right now. I agree that IV desferal would be best, but if he can't take it, he has to find another solution.
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HI Komal,
:welcome2 (yeah i know its too late to say this :grin anyway ) ..... did u ever tried Combination Therapy ??? ... Desferal + Ferriprox or Desferal + Exjade ?? ... in this National Thal Conference Doctors was talking abt Exjade+Desferal Combination therapy .. i m not sure when they would b starting this but i heard in a session abt this .... My Fe was in same range in ur is (more than 13000 at once :grin ) , but now its within 1000 , i m still on Combination therapy (Desferal + Ferriprox ) ... did u ever tried this combination ??? , if yes then, if u dont mind to share , why You quited to that and moved on Exjade Alone ?? ..... wud u like to mention this all :) ... BEst of luck , hope your Fe will b in safe range in soon future :) ...
Best Regards
Take Care
Umair
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Guys,
Since Komal is not correcting it herself,i will,she is a girl :) .
Komal,
Would you like to tell us what chelators have you used in past? And what happened while you were on them? why did you switch to Asunra? Since you go to NIBD i am assuming you are under care of either Dr Tahir Shamsi or Dr Saqib Ansari?
Zaini.
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What Zaini and Umair asked, I would like to know too.
Komal,
could you give us all a little more input as to your situation?
Thank you,
Lena.
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Hi,
Hope you all will be fine :smiley
Zaini you r right they suppose me boy.
In past i was using desferal but not on regular basis.When oral chelator Kelfer was introduced doctor advised me to use it,after using Kelfer it cause nausea vomiting abdominal discomfort and Hb level was also getting down.Same thing happnd after using Ferriprox.I never use combination therapy.
Doctor suggest me IV desferal but i takes hours and hours :sadnope many times i did but in vacations only.Am very comfortable with Asunra.
Please you people advise what else I should do to reduce iron faster??
I will visit doctor on tuesday 5th January.
Zaini am under care of Dr Saqib Ansari.
Komal
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Komal,
In my opinion - but it's only my opinion - Asunra alone will not speed things up. You need something stronger than that, more agressive and that is combination therapy or IV desferal.
Talk with your doctor about IV desferal and try to do it. This will be better than Asunra. Now we are talking about make things fast, not about being comfortable. Your priority should be to bring fe down as soon as possible.You can do it but you will need to try harder.
Lena.
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Komal,
One simple thing is to arrange to take IV desferal while you are transfusing. Lisa did this with every transfusion. She also went in weekly for IV desferal between transfusions. Unfortunately, in her later years, taking desferal subcutaneously became too painful for Lisa to do often enough to keep her iron level down. Please consider adding desferal on a regular basis. It is wonderful for cleaning out the free iron that is in your blood.
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Komal,
What i was able to understand through your post is that you never had any side effects with desferal,so why don't you start using it again in combination with Asunra,i know Dr Tahir Shamsi's patients are using it,why don't you ask Dr Saqib about that,once your ferritin is lowered you won't need to be on desferal,but for right now,this might be the answer.
Zaini.
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HI,
I never had any sort of side effects with desferal.
Andy
Can I use Asunra+desferal combination??what would be the right dosage of desferal according to my ferritin??
Today I went Aga Khan Lab for SF test report will come Tuesday evening.
Komal
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Komal,
I always think these meds should be taken under a doctor's supervision, so I think you should discuss this with your doctor to make sure you have proper monitoring. I do know people who have used both successfully and it does work to get the iron down much faster. I would suggest at least two nights each week with desferal and more if possible. The two chelators complement each other, with the desferal cleaning up the iron in the blood. Your ferritin level will drop much faster if you use this combination.
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Komal,
in addition to wat Andy has said : desferal doasge isn't something to b sugested on Ferritin level , Fe level does matter a little bit in it , but weight is the main factor to sugest the right dose for patient .....
@Andy,
m i right ?? plz correct me if i m wrong ....
Best Regards
Take Care
Umair
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Desferal dosage is based on weight but the dosage can vary depending on the iron load of the patient. The absolute maximum used is 6 grams daily and this is used only under extreme circumstances when the heart is in great danger. 2 grams is often sufficient.
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Hi, Every one
Today I got my ferritin report and ferritin level is
SF 13689 ng/ml
Urea and Creatinine report
Urea 36mg%
creatinine 0.6mg%
LFT Report RESULT Ref Range
Bilirubin Total 3.3mg/dl 0-1.0mg/dl
Bilirubin Direct 1.9mg/dl 0-0.25mg/dl
Alkaline phosphatase 222U/L 64-306
SGPT 63U/L F 0-36u/l
Doctor increase my Asunra dosage from 1000mg to 1200mg he also prescribed some other tests.
Random Blood sugar
Ca++
Serunm Zinc level & Serum Magnesium level
PO4
Alkaline phosphate
Vit D3 level
I PTH
ECHO Cardiography
Its all about today's meeting with doctor.
Andy please give your suggestion.
Komal
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Komal,
I will add my opinion here, before Andy's:
I would replace Asunra monotherapy chelation with combination therapy, especially that of desferal-ferriprox. What's more, IV desferal along with ferriprox. That is what is most needed, in your case now.That is what we, in our Thalassemia Unit, would do.When a thal's ferritin is as high as 5000 and more, he/she is admitted to the hospital for a week or so on IV desferal together with ferriprox.
Why don't you ask your doctor about it?
Lena.
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Lena
Ferriprox not suits me i can not take it more than the 3 days I started it with very low dosage just 1 tablet.I have to face joints pain,nausea etc.Otherwise ferriprox+desferal is best combination.
Second option is that I quit Asunra and go for desferal 24 hours chelation.Am I right???
komal
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Komal,
I didn't know you cannot take ferriprox. I am sorry. Next option -- maybe the only one -- is desferal together with Asunra and we are talking about desferal 7 days a week.
How do you feel to be admitted to the hospital for a week and get IV desferal? Have you talked about it with your doctor? I think you have mentioned something about this before.
Lena
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Komal,
I think desferal needs to be added to your chelation. I agree that if it is possible for you, a week or two of IV desferal would be a big help. Umair was able to take the IV desferal home with him. I don't know if that's possible for you, but if so, it would mean being able to take IV outside of the hospital setting. Even taking desferal subq at home would be a help right now. You need to get that ferritin level down so that the Asunra can do a better job of cleaning iron out of your organs. Desferal works well at removing the iron from the bloodstream, so desferal and Asunra will complement the effect of each other. The other tests the doctor ordered are all good and will help to further guide your treatment. The echo test will give some indication of your heart function so this may help to determine how much urgency is needed right now.
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Komal,
i want to add sumthing here under this topic :
when i startedd Ferriprox i xperienced the same nausea , stomac discomfort .. i stopped taking it many times and started again too :grin but finally when decided not to stop it then i kept taking that and with time side-effects disapeare away ...
when one of my thal ceter's frined started ferriprox he xperienced the same problemes , he asked me that he is gonna quit taking this , i told him to keep taking for atleast a month IF his Counts r stable n not it downish trend (i m talking abt WBCs ) .... now , it has been more than a year since his taking Ferrriprox .... Same happened to another friend ..... all i wana say is that if ur not experience any serious side-effects like WBCs Then if u give it a try for a lil long time mayb it suit u .... its just a sugestion based on my personal experience , m not saying to try this without ur doctor's advice but i think u shud tallk to ur dctor abt it /.... i m saying this bcoze my personal experience with Combination therapy ( desferal + ferriprox ) were super ,, my Fe was exactly in the same range ur is ... more than 13000 .... it will take time to come down , but surely if u r determined well then one day it will b within normal range :) .. best of luck :) ...
Best Regards
Take Care
Umair
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What is better example than Umair?
And I totally agree with Umair---maybe you have not given Ferriprox a chance. You, above all, can tell if you can try it again. Whatever you do,Komal,please act fast.You can lower your ferritin level, that's for sure,but only if you try hard as Umair said.
I would go for IV desferal in hospital for at least one week, If I were in your shoes, and then desferal at home 7/7 with the highest dosage allowed according to doctor's instructions.
Lena.
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Komal ,
As Andy Has mentioned abt IV desferal at home .. i never been admit in hospital for chelation :grin IV , Subq i used to Chelate both way and yes at home .... its not difficult if desferal is completely suitable and give's nno Side-effect to u , ... in my thal center ther r some patient who r at 5 days a week chelation plan , they wear 's pump on their biceps and do everything normaly , a boy oes to his shop after wearing pump ( actuly to of my friends ggoes to their shops after wearing pump)... so , pump is not sumthing that wil bother u i ur routine work , if u r worried bcozeiof its drop reminder beep u may turn that off too :grin ,............
Umair
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Hi Komal,
when I had ferririn over 10000 Ferriprox and Exjade wasn't available. During this time I had serial problems with my hart end liver. So we start Desferal i.v. 18g in 24 hours 6 Days a week. Within a few month feritin level dropped down. Desferal dosage was reduced first to 12 g than to 8 and at last to 6 g. Within a year feritin was almost in normal range (200).
If I reached the goal with monotherapy you can achieved much sooner with combined therapy.
God bless you
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Thanks ANDY ,LENA,UMAIR
You people are right I have to go with desferal at least 1 week,In my case Asunra is not much helpful as compare to desferal.Tomorrow I will go to hospital for IV then I will bring desferal at home.
komal
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I am happy for you, Komal!
If you persist and follow the right path,you will soon lower your ferritin.
Please keep us posted.
Good luck,
Lena.
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Good luck Komal, be sure that we are all backing and supporting you and i am sure you are going to make it soon. :hugfriend
manal
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Good Luck Komal! We are here for support. So you aren't alone in this fight.
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Good luck Komal :hugfriend
I am happy you are starting IV desferal,that will help for sure .
Zaini.
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Thanks all of you how sincerely you people encourages me like family members :smiley
I always need your worthy advices.
Komal
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Hi Komal,
I didn't participate in the discussion but certainly was reading regularly and quiet concerned with your ferritin level. There is no stopping when you have the will, the group believes you have the will, so keep fighting. Please keep us updated.
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Hi everyone,
Since last night am on IV desferal chelation,I put 5 desferal in normal saline.
after 1 hour I took 250mg Vit C tablet,I would continue it 24 hours.
One thing I want to ask along with desferal can I take my other medicines like Vit D calcium etc???
Andy please reply.
Komal
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Komal,
I'm happy to hear you're taking IV desferal. It will surely help.
It is safe to take supplements while chelating.
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What wonderful news, Komal!
You'll see you have made the right decision.
I agree with Andy, it is safe to take any other medication while chelating.
Lena.
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after 1 hour I took 250mg Vit C tablet
Andy,
wat do usay abt that ( Vit-C ) ?? i think she dont need that at this stage when her S.Fe is high ..
Komal,
S.fe show's the iron in blood stream , and your S.fe is high ... desferal bind's iron from blood stream .. vit-c release's the iron from organs to blood , thats why doctors advice's vit-c soon after chelation started with desferal ... [bgcolor=#ffff00]ur S.fe level is high so (as far as i know) u dont need vit-c to release more iron from organs to blood stream .. i think it wud't b good for u at this stage ...[/bgcolor]
please read these posts :
http://www.thalassemiapatientsandfriends.com/index.php?topic=2042.msg26732#msg26732
http://www.thalassemiapatientsandfriends.com/index.php?topic=2042.msg23453#msg23453
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Quote from http://www.rxlist.com/desferal-drug.htm (http://www.rxlist.com/desferal-drug.htm) regarding Vit-C with desferal
sad that i find it out after i i've been taking Vit-C 250mg since my fe level came 9000
Note : all wat i m saying is my personal opinion and nothing more than that , its my view you may agree or disagree to it ...
ps : ( i wanted to write the S.fe level instead of writing "high" here but i dont know why i canceled to mention that and deleted that from everywhere i mentioned that in this post, once after writing.)
Best Regards
Take Care
Umair
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I think Umair is right--not to take vit c in this high level. Let's hear what Andy says, too.
As to not mentioning the fe level, well, Umair you are so discreet and sensitive!
Lena.
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Lena,
actuly , i m trying to be carefull when posting, bcoze i think that i weren't been careful in past and i think that me n others have paid for that .... :grin ... that is the reason why m posting only when i feel that there's need of my post .... :grin ....
Umair.
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Yes i agree with Umair too but i do remember Andy saying that a max dose of 250mg will be okay, but let see if this applies on high ferritin
manal
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Komal,
The others have brought up the point about vitamin C. Vitamin C does increase the amount of iron chelated by desferal but there are some precautions. The maximum amount varies depending on which source you consult, but the highest amount of vitamin C that can be safely prescribed for thals using desferal is 200-250 mg daily, in split doses. You should slit your dose into two doses daily. However, there is another very important precaution, and this will be relevant depending on the current condition of your heart.
http://www.drugs.com/pro/desferal.html
In patients with severe chronic iron overload, impairment of cardiac function has been reported following concomitant treatment with Desferal and high doses of vitamin C (more than 500 mg daily in adults). The cardiac dysfunction was reversible when vitamin C was discontinued. The following precautions should be taken when vitamin C and Desferal are to be used concomitantly:
* Vitamin C supplements should not be given to patients with cardiac failure.
* Start supplemental vitamin C only after an initial month of regular treatment with Desferal.
* Give vitamin C only if the patient is receiving Desferal regularly, ideally soon after setting up the infusion pump.
* Do not exceed a daily vitamin C dose of 200 mg in adults, given in divided doses.
* Clinical monitoring of cardiac function is advisable during such combined therapy.
Has an echocardiogram test showed any impairment in your heart function? If it has, you should minimize any vitamin C to what you get from your diet, until your heart shows improvement. If your heart has shown normal function, it will be safe to split your vitamin C dose into two and take it twice daily. Do NOT take more than 250 mg daily.
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Hi everybody,
Sorry for late reply,my computer was not working.I got desferal whole week over 24 hours.Am lil worried coz i toke 250 mg Vit C tablet along with desferal,without asking my doctor.I did not split the dosage.
From monday am going to start Asunra again.
Komal
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Komal,
Don't worry about the vitamin C. If you didn't notice anything unusual, like irregular heartbeat or excessive tiredness, there is no concern. I hope your next ferritin check shows some improvement.
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Hi,
Andy I did not feel anything unusual, so next time should i take Vit C??This week I will take Asunra Next week again I will go for IV desferal.
Komal
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Good for you, Komal. You will surely see a drop in your ferritin level after what you are doing.
I am glad that you decided to take action.
Lena.
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Komal,
I think you should divide the dose into two doses next time you take desferal.
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Andy,
this is something that has puzzled me. You see, for years on I have been taking the vit.C of 250 in one and only dose, a little before starting the pump. Since I have read in this site that the dosage should be split in half, I try to get half in the morning and half in the evening. That means that less is taken when having desferal and this consequently means what? that less iron gets in the bloodstream to be thrown out by desferal? I don't know....
Another thing is that doctors say that vit.C should be taken together with desferal.
Lena.
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Lena,
You're right. This needs some clarification. First, in general, if you are taking desferal for longer than 12 hours at a time, which I assume is the case when taking it IV, I suggest splitting the dose into two because vitamin C washes out of the body fairly quickly, so to maximize the effect of the vitamin C, take it in two equal dose (not to exceed 250 mg daily) while taking the desferal. In this specific case I am concerned about the possibility of high heart iron, so splitting the dose will minimize the potential for releasing too much iron into the heart at once.
For someone using desferal for a routine period of around 12 hours, the C should be taken in one dose at the beginning of the desferal administration.
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Everything is clear now.
Thank you, Andy.
Lena.
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Thanks Andy and Lena
Next time I will split the Vit c dosage.In coming days I will go for desferal.
Komal
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Best of luck Komal
manal
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Thanks Manal
last night I went hospital to maintain IV again i started chelation.This time I did not use vit C.
KOMAL
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Well done, Komal. It may seem difficult to do IV again and again, but it will show good results. Keep that in mind when you get bored and tired!
As for vit c, that's o.k not to take it as your fe level is high.
Take care,
Lena.
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Hi,
Andy most of time I have blue colour spots on my body they appears and then vanish after 2 or 3 days.Today I saw it on my arm its somehow big painful too.But I never have nasal or gum bleeding.what I do for this??
Komal
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Komal,
Are the blue spots bruises?
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Yes they look like bruises.Is it due low platelet count?
Komal
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Komal,
Do you have any history of low platelet counts?
I know this issue has been going back and forth here and I have been reluctant to say don't take vitamin C, and instead suggested splitting it into two doses and I'm going to say that again. Continue with your vitamin C daily. Take 100-125 mg two times daily. It is not a high dose and no study ever showed these low doses to pose any danger to thals. The easiest way to keep from bruising is to make sure you are regularly getting vitamin C. The vast majority of thals are deficient in vitamin C but doctors have been hesitant to recommend it because studies of higher doses of C have led to reduced heart function in thals with significant iron load, but the reaction has been to overreact, depriving thals of the single most important food based nutrient. No doctor can explain to you how you can be healthy without vitamin C, because it is absolutely essential to good health.
No thal should be concerned about taking low doses of vitamin C daily. There is not a single bit of evidence that this is harmful in low doses. Komal, please start taking vitamin C daily and let us know if you get less bruising.
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Hi Andy,
yes mostly my platelet count remain low,I start taking Vit C as per your advise.Hoping this problem will resolve soon.
Komal
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Hi Andy
Since 2 days I am on desferal I want to know should i completely rely on desferal or combi with Asunra???In case of combination how many days use desferal in a month?
Other problem is that my weight does not increase it is just 32kg since 4 years. :( how to gain weight till 35kg?
Komal
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Komal,
What were you doing for chelation before the 2 days you have been using desferal? You need to be taking desferal 7 days per week right now. If you want to take Asunra also, please talk to your doctor about the combination so that you can be properly monitored. I cannot advise on the combination unless your doctor is aware of what you are taking.
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Komal,
Take desferal 7 days a week. You must be on aggressive desferal scheme right now - whether along with Asunra or not, it does not matter. Normally you should be on desferal-ferriprox combination therapy and on high doses. But as long as you are unable to take ferriprox ( I can't remember why but it does not matter), cling to desferal 7 days a week. The dose will be arranged by your doctor but in no case should it be too low.
Lena.
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Andy,
Two days before I was taking Asunra.Am using 6 vials of desfersl at a time.I asked my doctor he decided the combination of Desferal+Asunra combination.Please explain what I have to monitor???Do you think it is safe combination?
Lena,
I take desferal very slowly each session goes over 24hrs.during chelation I faced abdominal pain and headache.
Komal
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Komal,
What program has your doctor given you for taking Asunra and desferal together? How many days per week of desferal and how much Asunra daily?
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Andy,
My doctor did not give any program about Asunra and desferal he just said use single chelator at a time.Do not take together am taking 1200mg Asunra.So please guide me to make plan for a month.I will discuss it with doctor.
Komal
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Komal,
If your doctor doesn't agree, you should go along with what the doctor says, because the doctor needs to monitor you regularly for creatinine levels and must also run regular liver function tests. You are on a high dose of Asunra, so perhaps you should just take 1200 mg daily and see how well it works for you. In one month you can check to see if your ferritin is dropping. If it does, then continue with Asunra. If it doesn't drop, I would highly recommend switching to desferal 7 days per week until your iron levels get down into a safer range.
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HI Andy
Week before I gave blood sample for these tests.Am sending you the results kindly check them.I receive them today.KOMAL
TESTS RESULTS NORMAL RANGES
1-Glucose (Random) 86 mg% Up to 180
2-Alkaline Phosphatase 334U/L 98--279
3-Calcium 8.3mg% 9--11
4-Phosphorus 4.9mg% 2.5--4.5
SPECIAL CHEMISTRY
TESTS RESULT UNIT REFERENCE RANGE
5-Magnesium (serum) 1.69 mg/dl 1.3-2.5
6-Vit D3 23.86 ng/ml <20 deficient
21-29 Insufficient
>30 Normal
>150 Intoxication
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still 900. Next result I will get tomorrow. I also get tomorrow an extra bag because of my vacation. So I dont think I will check it before May again. I'll let you know.
Good luck with all your stuff Komal! :hugfriend ( I dont know of it is bad, i dont think so, but I am an egghead on this piece of lab world).
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Komal,
The only comment I have about these tests is that your vitamin D level is low and it is important to correct it. You need to either get some regular daily sunshine or you can take vitamin D supplements. I would suggest 2000-5000 IU daily until your D level gets above 30. Vitamin D is necessary so that many other nutrients can be properly used by the body and interestingly, thal majors with high vitamin D levels have lower levels of iron in their hearts.
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Whooohooo! It's only 509!!
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Dori,
I suppose this is your fe count! Good for you! Exjade works, doesn't it?
Lena.
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ANDY,
Am feeling pain in my shoulder and elbow joint since 3 days,I feel the medicines and the dosage am taking is sufficient.
Vit D one tablet of 0.025mcg and one tablet of Osnate (Ossein Mineral Complex) of 800mg.It has calcium+mineral.
Please guide me should I replace them with any other brand like Osteocare and Centrum Silver????Also mention the correct dosage my weight is 32kg.
Komal
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Si, my fe. Despite those side effects Exjade still does its real job too. :)
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Hi Komal,
I don't understand the vitamin D dosage. It is almost nothing.
http://dietarysupplementdatabase.usda.nih.gov/faq.html
Vitamin D: 1 IU is the biological equivalent of 0.025 µg cholecalciferol/ergocalciferol
You need to be taking much more than 1 IU of D daily. My own experience and observation of others and also after talking to a top thalassemia doctor, is that you need at least 2000 IU of vitamin D daily to correct deficiency. I take 5000 daily and it makes a big difference. For you weight, I would suggest 2000 IU daily minimum. If further testing shows you are still deficient, take a higher dose. I also think Osteocare is a superior supplement to Osnate. Osteocare has a better balance of minerals. I find Osnate particularly lacking in magnesium. Centrum Silver is also a good multi-vitamin, so if you do have access to these, switching would be a good choice.
Joint pain is a side effect of Exjade (Asunra) in some people. As long as you can tolerate the pain, you should not stop Asunra. If the pain gets to be too much, stop Asunra for a few days and see if it feels better.
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Hi Andy
Today I went to hematologist to show my reports,about Vit D he did not increase the dosage.Right now am taking 0.25mcg tab of One Alpha Leo daily.
Again I have bruises on thigh so he stops Asunra for 5 days and prescribed 2 other test P.T and APPT.Today Platelet count is 28 and Hb is 11.1.Am using citrus in my diet for bruises.
Need your comments.
Komal
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Komal,
One Alpha Leo is a special form of vitamin D called Alfacalcidol. This is used to treat hypercalcemia and is a special form of D used when parathyroid hormone production is low. I would trust the doctor to treat this condition. The tests scheduled are to test parathyroid hormone levels and also a clotting test (APTT). Your platelet count is low and this is the likely cause of your bruising. Please follow your doctor's recommendations, as he is trained to address these issues.
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When I am on Exjade and my fe makes a real jump down...my platelets makes a big jump down too.
Is that also your case Komal?
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Hi Andy,
Today i got the results of PT and APTT
TEST RESULT CONTROL
Prothrombin time(PT) 10Sce 10Sec
INR 1.0
APTT
Test 40Sec 30Sec
TEST RESULT UNIT REF RANGE
LFT
Bilirubin Totall 2.3 mg/dl 0-1.0mg/dl
Bilirubin direct 1.0 mg/dl 0-0.25
Alkaline Phosphatase 348 U/L 64-306
SGPT 30 U/L 0-36
After seeing the reports doctor prescribed further tests.
1) BLEADING TIME
2) ECHYMOSES Platelet count
He said take Vit C tablet of 500mg but i think dosage is very high.am very confuse because of these blue spots.
KOMAL
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Hi Komal,
I really don't think you should take more than 250 mg vitamin C daily. The blue spots may be due to your ongoing low platelet problem and this is why your doctor is ordering these tests. This is related to liver function and your high iron along with hepatitis may be responsible for the low platelet level. Please continue to chelate daily, as this will also help control hepatitis.
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Andy
I do not have hepatits, Hep B and Hep C are negative.yes ferritin level is high am not taking Asunra since 10 days.
Am really worried is the problem of blue spots related to ITP??kindly give detail answer is there any possibility in Thalassaemia.
komal
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Komal,
Below is a photo of what ITP looks like on the skin. Your doctor is running these tests to determine how serious the slow clotting problem is. Prednisone is often used as the first treatment. If it's a severe problem that doesn't respond to prednisone, splenectomy might be the recommended solution. How long have you had this problem and do you know if you were sick before it started? ITP has been associated with Human Parvovirus B-19 (Fifth disease) and also to insect borne diseases. If there is any possibility of this, it might be wise to be tested for Human Parvovirus B-19 before deciding on the treatment.
http://www.nhlbi.nih.gov/health/dci/Diseases/Itp/ITP_WhatIs.html
(http://i71.photobucket.com/albums/i126/comicsetc/Reference%20pics/itp_photo.jpg)
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hi
komal
i m from lahore and in our thal centre (ganga ram) many patients are on combination therapy of asunra+desferal then why your doctor is reluctant to advise u this.
if you have problem with this combination then you should try ferriprox+desferal and it is very effective and i am using this and i have brought me fe level from 11000 mg to about 800 mg. in the begginning you should take desferal 24 hours means every day by pump or iv...
it will take time but u shoul make right decision at that time and ask properly by your doctor and ofcourse he will guide u more better..
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Andy
Today i went for Bleeding time test and total time to stop bleeding is 10min 10 Sec.
My hemo is not interested for further test he said you have history of low platelet count.
I just have 5to6 tiny reddish spots on legs as shown in picture which you send me big blue spot near knee has remove now.one more thing I do not have these bruises continuously they just appear in 6 or 7 months.I was not sick before this.
komal
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Komal,
The good news is that your clotting tests show that this is not a serious problem. My suggestion is just continue with your normal treatment routine and always chelate as much as possible. High iron leads to so many different problems, and the only way to combat this is to lower your iron load.
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Andy,
You are great you release my tension how much I was worried about this.Definitely i will continue chelation as much as possible and other medicines.
Komal
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Hi Andy,
I am on Iv desferal these days,its second time I have abdominal pain its mostly occur after 5 or 6 hours of chelation mainly after having meal.Before this I have same problem but not after every meal as happening now.Am using 6 vials of desferal.
Komal
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Dear Friends
I m patient of major thalasssemia if u don’t mind I m asking some about some problems
Friends 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
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When I had it that why I couldnt bend anymore.
Later when I had it by IV I had also problems. The guess was that the fluid contain way too much desferal. You might try to lessen the dosage of desferal.
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Diluting the desferal with more water also does help. If you take the same amount of desferal over a longer period with more water, it actually does more chelation.
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Hi Andy and Dori
My dose is 2.5g Desferal in 25ml of water
First I make 1g desferal in 10 water ml for 7 hours and then I make 1.5g in 15ml water for 9 hours
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Rehman,
Try 30 ml water at least, for up to 6 vials of desferal. Also try 10 hours or even 11.
I hope this works.
Lena.
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Hi Andy,
I am on Iv desferal these days,its second time I have abdominal pain its mostly occur after 5 or 6 hours of chelation mainly after having meal.Before this I have same problem but not after every meal as happening now.Am using 6 vials of desferal.
Komal
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Hi Komal,
How much water are you using for 6 vials of desferal and how many hours are you taking it? You may need to dilute the desferal with more water to reduce the pain.
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Andy
I put 6 vials in 350 ml Plasaline (0.9 % sodium chloride) and I take for 22 to 24 hours.
komal
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Dear Friends
I m patient of major thalasssemia if u don’t mind I m asking some about some problems
Friends 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
Rehman lower ur desferal concentration and increase ur pump timings too. 1g for 10hours.. swelling and reddish skin is always what i experience..infact that kind of itching in reddish is wut i like :dunno i use to play with it..gives me bit of joy..and always swell my area whether abdomen or arm...so get used to it buddy..it shudnt b a problem
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waheed Brother
i was try 1g butt my skin is very thick.
radish and pain is again im very upset for my iron
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thank you Lena for Reply
i was try u r way butt that time is again reddish and pain
because my skin is very thick.
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Komal,
Do you mean 35 ml of water? 350 is very much too high.
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Dear Friends
i need 27G 12mm needle for my subcotenious because my skin very thick .
i was try thalaset 10mm butt that is not working .
cane you tell me about 12mm needle .where cane i buy and who is seller
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Dear Friends
i need 27G 12mm needle for my subcotenious because my skin very thick .
i was try thalaset 10mm butt that is not working .
cane you tell me about 12mm needle .where cane i buy and who is seller
sorry for ignorance rehman .but what does that thick means?
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Dear buddies
finally after diluting desferal in more water my problems are getting better
thanks Friends
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Dear buddies
finally after diluting desferal in more water my problems are getting better
thanks Friends
hasta la vista baby !!! :thumbsup
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thanks taimore
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Taimore ??? :S .. hey Rehman who is he ?? lolzzz :rotfl
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Hi Andy,
Hope you will b fine.My blood test shows MP positive still i don't have fever except slight throat pain,should i go for medicine?test done on 28th April.
Is there any harm to use desferal?
Komal
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i dont know wat MP is .. but i think this link wud b helpful for u, to decide that to use desferal or not ..
http://www.drugs.com/cons/desferal.html
Umair
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MP is Mycoplasmal pneumonia. The incubation period lasts as long as three weeks. Caution needs to be exercised in patients with lowered immune systems. Komal, if your condition worsens, do not hesitate to contact your doctor. In most cases, the illness resolves on its own, but because thalassemia is involved, please be cautious and report any changes, especially any symptoms in your lungs, to your doctor immediately. I do not find and contraindication for desferal with PM. In fact, iron chelation has been studied in PM to see if it slows the rate of infection.
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Some viruses are iron friendly and worsen if you chelate with desferal. I do not know whether this is one of them...
Lena.
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Lena brings up a good point about infections. The Yersinia bacteria is always noted as one that thrives due to the siderophore that is provided by desferal.
The Prescribing Information from Novartis for desferal provides the following information.
http://www.pharma.us.novartis.com/product/pi/pdf/desferal.pdf
PRECAUTIONS
Iron overload increases susceptibility of patients to Yersinia enterocolitica and Yersinia
pseudotuberculosis infections. In some rare cases, treatment with Desferal has enhanced this
susceptibility, resulting in generalized infections by providing this bacteria with a siderophore
otherwise missing. In such cases, Desferal treatment should be discontinued until the infection is
resolved.
In patients receiving Desferal, rare cases of mucormycosis (Mucormycosis is the term used to describe fungal infections caused by fungi in the order Mucorales), some with a fatal outcome, have been
reported.
The Yersinia family of bacteria has been particularly singled out. Desferal should always be stopped during this bacterial infection.
I am continuing to search to see if there is any concern about desferal use during Mycoplasmal pneumonia infection. I will report back with anything I can find.
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Thank you Lena for bringing up the question. It resulted in a long search, but finally I found what I was looking for.
http://journals.pasteur.ac.ir/Research_Microbiology01/Issue3-4/291.pdf
No iron uptake systems of the ABC transporter
type were identified in the genomes of Mycoplasma
genitalium and Mycoplasma pneumoniae.
ABC transporter type includes those bacteria that use siderophores as a method of obtaining iron. Desferal provides the siderophore in Yersinia infections. Mycoplasma pneumoniae does not use this method to obtain iron and cannot benefit from the siderophore that desferal provides. In theory, reducing iron should reduce the iron available to infections, but this does not work with all bacteria, as they have mechanisms for maintaining iron stores. In any case, desferal will not be a problem in the case of Mycoplasma pneumoniae infection.
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Hey Komal,
I know you said (back in january sometime) that you didn't want desferal because it does take a long time, but have you considered push desferal? I used to be on the subcutaneous pump desferal which would take me about 8 hours to inject. After that I switched to the Exjade when that came out, however, I had a lot of bad side effects that I couldn't deal with as I am in college and didnt have the time to deal with them. So I switched back to the desferal but now I dont do the 8 hour pump once a day. Now I take the same dose, but twice a day and I push it in manually and it only takes about 5-10 minutes depending on how fast you push. So all together it takes me maybe 30 minutes everyday for the desferal. And It really works. Out of all the treatment options I have done for my iron, this method has gained me the best and fastest results. When I started this method of treatment my iron levels were in the 8000-10000 range. Within 4 months of started this treatment I was down to the 3000-5000 range. For me that is a very good drop. None of the treatments I did before worked as well, not even the desferal over 8hrs.
Archana
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Hi Patel,
I never listen about push desferal,30 minutes really amazing.But u know doctors said take desferal for long time in order to get good results.
Now am taking desferal for 24hrs its tough but have to do.
Andy whats your opinion about push desferal?
komal
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Komal,
when desferal got into circulation, some 30 years ago, its first use was that of pushing it with a syringe. I remember taking it that way in my behind. But that was because pump was not yet discovered.After pump got into use, it was the only way - the best way - to administer desferal.
I would say keep on with your chelation schedule according to your doctor.
Lena.
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I have heard about people using a bolus pump for desferal, but this is specifically warned against in the prescribing information from Novartis.
http://www.novartis.com.au/PI_PDF/dsf.pdf
Precautions with administration of Desferal:
Desferal should not be given in doses higher than recommended. The drug should not be
given at concentrations higher than 10% as this increases the risk of local reactions.
Intravenous administration of Desferal should be undertaken only by means of slow
infusions. Rapid intravenous injection may lead to severe hypotension and shock (e.g.
flushing, tachycardia, urticaria and collapse). Rates of infusion should not exceed 15
mg/kg/hr.
When given by intramuscular injection, it may be necessary to administer the dose at more
than one site in order to allow sufficient dilution and distribution of the injection volume, and
to minimise pain on injection (see “DOSAGE AND ADMINISTRATION”).
For subcutaneous infusion, the needle should not be inserted too close to the dermis. Desferal
is not formulated to support subcutaneous bolus injection.
Lena is the voice of long experience with chelators. You would be well advised to follow her advice about chelation.
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Thank you, Andy. :hugfriend
I got my MRI results today. It seems o.k.
T2* heart : 31,6
T2* liver : 34 and 0,9 mgr Fe/gr.
I have given it a thought about how to proceed. Many of you, I am sure, would suggest to give it a break but I do not think this is the right thing to do. So, I'll go on like this:
12 Ferriprox per day and twice a week desferal of 5 vials per time. I think this will maintain a negative iron balance, don't you say?
Lena
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I cannot read those results, but since you say they are OK: :thumbs
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Lena,
Since you are so closely monitored, any fine tuning of your chelation plan can be done as needed. Your scores are excellent, but taking a break would probably only lead to catching up later on. And I agree, why allow any iron build up at all? Keep us posted on your continued progress.
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My thoughts exactly, Andy. Why allow any iron to build up and have to catch up later on?
The key word is "maintenance". It's like putting up weight after a strict diet. The secret is not only to lose weight but to keep it down as well. Same thing.
I have often read in this site that people (patients and doctors as well) consider they should break chelation for a while after having lowered the ferritin level. That's wrong - in my opinion, it leads to iron build up, as one cannot give transfusions a break, too. Cannot stop them.
Anyway, I'll keep on with my plan. It has been working successfully for so many years.
Lena.
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hi
my ferretin level now is about 190 so my doc say slow your desferal and use it 2 time in week with 4 vial and 10 ml watter
I use 8 pill of L1 too but I use desferal 3 or 4 per week with 5 vial and 12 ml watter
whats your opinion? I do as my way or sth that Dr say?
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Right now your ferritin is quite low so desferal twice a week, along with the L1 should be enough. If your ferritin does rise, you can add one more day of desferal per week.
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zs,
I fully agree with Andy, the only thing I would correct in your chelation plan is the "12ml" water you use to dilude your desferal. I think it is too low. Why don't you increase it to 20ml of water?
I also take 5 vials of desferal per time but dilude it in 30ml of water.It makes it easier to absorb.
Lena.
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hi
I use 5 vial with 12 ml watter coz my syringe pump MS18 (graseby) dosnt accept more than 12 ml with syring 10 and if use syringe 20 the rate of infusion will be more than rate that must be so I preaper 5 vial with 15 ml watter
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hi lene
how many time should take u r infusion pump for 30 ml .
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zs,
i agre to Lena and Andy .. u r using much less water to dilute 5 vials of desferal .. i have been on 5 desferals a day .. i used to take 25ml water to dilute 5 vials of desferal ... i have the almost same kind of pump ,, mine is MEids's Infusa-T , that is also support to only upto 10ml syringe ... but , the method i used to use 25ml water for 5 vials was to make 2 desferals in 10ml when that finish's then replace the empty sringe with 10ml filled syringe of desferal and when that get to finish then replace that empty syringe with a 5ml filled syringe .. make sure to not get the air in .. i posted the procedure how i used to replce syringes , in another thread somewhere , i willl try to find that and share that to you ASAP .....
Best Regards
Umair
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hi umair
it take alot of time to finish 25 ml so maybe I reduse 5 vial to 4 to solve that its better way than use pump for longg time :biggrin
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zs,
I do not think 4 vials is a good idea -- it is too low a dosage, you will be pricked for nothing.
Can't you put the desired time to your pump? 8 or 10 or 12 hours? The rule for the pump is every vial to be diluded to 2,5 ml water, so 5 vials goes to 12.5 ml water. Technically it is o.k to use 12 ml water but I think it is too low. Anyway, I think it is preferable than lowering the vials to 4.
Rehman,
I have arranged the 30ml to last for 10 hours.
Lena.
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zs,
i agree to wat Lena has said that it wouldn't be a good idea to reduce desferal dose .... bcoze desferal dose is subject to your body weight and your body is subject to blood need and blood need = iron you're getting .... desferal and blood need is subject to your body weight .. so, if you're planing to cut down desferal dose then u must cut down the blood transfusion ( or blood volume you transfuese with ) which isn't possible ( to cut the blood transfusion ) so dont cut desferal as well ..
( Andy and Lena , please correct me if i m wrong at any pint of this post ... :) )
Regards
Umair
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Dear Lena
thanks for reply cane you send me you are complete procedure of diluting desferal and you are pump speed timings.
becouse im using 2.5G desferal with 20 ml of water in 20ml syringe butt that take a 17 hours butt i want that is finish in in 12 0r 14 hour.
cane you send me a good opinion . i have infusa T pump
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Rehman,
when you say 2.5G you mean 5 vials of desferal, right?
It is o.k to dilute 5 vials in 20ml water, but I do not know the brand of your infusion pump to give you instructions. You can make it to last 10-11 hours.
Lena.
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Dear lena
i have Infusa T pump
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Rehman,
I do not know this kind of pump, how it works. That's what I meant...whether you can adjust the time or not.
Lena.
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This pump can be seen at http://www.medis.it/t.asp
I don't know enough to comment, so please advise.
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Thank you, Andy.
Rehman,
As I can see your pump has adjustments on it, so you can put the button accordingly.
A full syringe of 19-20 ml measures 60mm, so if you want the pump to finish in 10 hours you must divide the 60mm/10hours and put the time adjustment button to 6. If you want it to finish in 12 hours, put the button to 5 and so on. I think 10-12 hours is o.k when you have a syringe of 20ml. It is enough. But if you prefer it otherwise, each time divide the 60mm with the desired time and put the button to that number.
I hope my instructins are clear.
Lena.
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Hey,
I have been pretty ill two weeks ago. I've had a blood transfusion last thursday. My ferritin was dropped to 400 and my hgb was dropped to 7.7 Only one bag was given. My next blood transfusion is next week thursday late morning. In the evening I got an exam and I moving blood transfusion forward is not an option and postpone it to the other week also not. So, for the first time in my life taniking up and an exam will be on one day. I will get also one bag that time. I wonder what my hgb will be by then. I know, 7.7gl/dl is a shocking mark. I was suprised myself too.
Dori
sorry for the messy message
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Hi Zaini,
how are u?I want to ask Thumbtack style needles r available in Aga khan hospital?I have asked every where in surgical markets but these r not available.is it possible to get through shipment so what would the procedure?
Komal
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Hi Komal,
I am sorry i don't have any information about that,but i'll inquire on my next visit.
Zaini.
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hi my fe is 7000 now t have started taking 1000 mg/day (kelfer) should i go for combination therapy or continue same .any suggestions
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Ankita,
combination of kelfer and desferal together will be needed in your case. Only kelfer will not do the job.
Lena.
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I agree with Lena. You should add desferal to your chelation program until you get your ferritin down to a safe level.
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Was quite Busy with the kids and that too with samyu as she has started her schooling.She is having Asunra 300 mg/day.Her weight is 13.1kg.How much dosage of Asunra is she supposed to have for a good and effective chelation? I am from Chennai,India. Do we get FERRIPROX in India?
Kindly help me on this.
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Her dose of Asunra could be 400 mg daily. In India, Kelfer is the same drug as Ferriprox.
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hi all
my ferrtin is about 50 now I dont know continue desferal (as I say I use desfonak ) as before or not I use 5 vial for 3 day per week also use 8 deferiprone each day
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ZS
In your case, there are two options, either to
1- Stop chelation completly until ferritin rises again and then re-satart chelation and the benefit of this option is that you give the body a break from chelation drugs with all its side effects.
OR
2- Take only a maintaining dose and not a chelating dose to keep the same levels of ferritin.
The benefit of this option is that you don't expose your body to iron overload again and therefore keeping your organs safe and healthy.
The decision of which option to choose depends on the doctor point of view, whether the patient is a child or an adult (has to do with growth), tolerance of side effects if there are any...
But please bare in mind that doing LIC and T2*is so important to determin the exact situation of iron overload in the body because ferritin could be deceivng as we disscussed before.
We have seen members with a ferritin in the 100s level and having iron overload in the heart, so in this case stopping chelation will not be an option.
Manal
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zs,
I totally agree with Manal. I personally would choose the second option -- to continue chelating in a lower dose. I have never stopped completely chelation even when my ferritin reached 45. I think this is a mistake. It would be nice though, to have a heart and liver MRI, if this is workable in your country.
Lena
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Thalpals please may I have your valuable advice?...
Regarding ferritin levels our older son, BB, is at 311 and the younger one, LB, 501.
BB is taking Ferriprox, 3 tabs 3x day for 4 days, weekly. His ferritin was much lower, 100, but has risen slowly. His T2* shows that his heart and liver are free of iron. Previously he had severe heart iron and mild liver iron. I feel that he should increase the Ferriprox by one day to stop iron building up. Please tell me what you think about this.
LB's ferritin levels has been declining slowly and is at 511. He is taking Ferriprox 3 tabs 3x daily 7 days a week. His T2* showed him to have mild heart and liver iron but recently it shows his heart to be clear and liver with mild iron. I feel he is ok with this dose however I would still like your advice.
:heartred....Emby.
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thanx dear lena and manal for reply
yes I can go for MRI but I am so lazy for that I o MRI 2 year later it was nt so good t2* for my heart was about 8 and I must redo that for know how is every thing these days
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You should really get another T2* to see what progress you have made on lowering your heart iron. Then you can make an informed decision about what your current chelation program should be.
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Emby,
Ferriprox is doing a good job for your sons and progress is good. Watch BB's ferritin. His Ferriprox dose will probably have to be raised by one day a week as you suggested. The 300 range is very good, but if it continues upward, he will need at least one more day each week.
I think parents and patients have to closely monitor ferritin levels and chelator dosage when dealing with low ferritin levels. Those involved daily can react much more quickly to changes than doctors can. Managing the chelation regimen the way Emby's sons are managed here can ensure that enough but not too much chelation is done. When ferritin is in the range of below 300, close monitoring is required, and parents and patients need to be aware of any signs that too much chelation is being used. At these levels, only maintenance doses of chelators should be used.
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With a ferritin of 102 (last count) I take 12 ferriprox seven days a week and 5 vials of desferal twice a week. With this dose I keep my ferritin around 100, though some of you would consider it too much.
Lena
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Lena,
I think you are best qualified to answer this question because you have used all three chelators and have done so at low ferritin levels. Do you feel that all chelators are not the same at low ferritin levels? For example, are you more comfortable with Ferriprox than Exjade at this level? Desferal? My personal opinion, based on potential side effects, is that Ferrirpox would be the easiest to manage at very low ferritins. What do you think?
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Good question Andy,
At first I'll say that I have not used exjade as monotherapy. I have taken it along with ferriprox and it worked, the combination definitely lowered my ferritin level at 68 from 113 - I am referring to the counts in order for you to get a clear picture of what I am saying. I have only used ferriprox alone as a monotherapy for a whole year and my MRI showed that it was not enough. Although it maintained my ferritin at a low level as well, the T2* liver worsened than the year before (though still clear). That made me reconsider ferriprox monotherapy and add exjade at first(lower dose) and then desferal after my decision to drop exjade as too risky(my opinion).
Andy, I agree with your opinion here for exjade potential side effects- a risk one does not take in low ferritin levels, at least I did not.
After much thought and consideration, I came to the conclusion that ferriprox is enough in low ferritin levels but with a slight touch of desferal in order to keep the liver clear.And this seems to work. Of course, one can rearrange chelation program. You see, when in low ferritin levels you have the option to skip one or the other for some time. Let's say, you want to get some rest for a month or so-you drop desferal and then the next month you press harder. This is a choice you have when in these levels - although I would say that I have not applied this a lot - but then I am very disciplined in my chelation- another thal could do that.
I think that all chelators have the same effect on low fe levels, considering of course the effect each of them has on the organs. Exjade and Desferal mainly for liver - Ferriprox for heart. That's why combination therapy is needed even in low ferritins. Of course, this is not the case with the high ones. In high levels monotherapy is surely not enough.
In the end, I have never been comfortable with exjade since the beginning - that's why I dropped it in spite I hadn't had any serious side effects.
Lena
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Hello Dears
cane you tell me where cane i do the MRI T2* becouse im living in pakistan and in pakistan this is not available .
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Thank you for the advice....much appreciated :smiley!
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Rehman
Is it an option for you to travel outside Pakistan?
manal
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thanks for reply manal yes i can travel every where in world just tell me country's and places of MRI t2*.
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Rehman
In this link there are some names of centers worldwide
http://www.thalassemiapatientsandfriends.com/index.php?topic=259.0
Also you can read in the section of'' treatment centers'' for more details
http://www.thalassemiapatientsandfriends.com/index.php?board=9.0
Since you have the option of travellig, i advice you to choose countries that have comprehensive treatment centers ( for eample Italy in Europe) in order to have a full assesment concerning your health and treatment
manal
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Hi.. I am a mother of two thal patients. I read in one of your past posts that you have used a combination therapy of Exjade and Ferriprox.I want to know if this is a safe combination..my kids r on Exjade at the moment and their ferritin level is quite high..pl reply. thanks
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hi komal ,Anday says absolutely right .
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Farahs,
I have used Ferriprox- Exjade combination, but as I am not a doctor I cannot talk about the safety of this combination. There are doctors who support this scheme, there are others who do not as -up to now- there have not been any clinical studies about it.
Lena.
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thank you