Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Rani pk on August 31, 2007, 04:04:13 AM
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asallam aliekum n hi
2 all members
im very happy n i want to share this happiness...
on 29th june i started combination thrapy...
with ferinil n desferal few days i had ferinil but ???
than due to unavalability of ferinil i start taking chelox...
in the start my cbc was in cheack every week but now
its in cheak in 15 days....
im happy to have 6 capsul per day, 5 days a weak n only two days desfral
inshallah ill post here my every report here to share with u all..ok
now allahafiz
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I'm so happy for you!
Glad to know that you will be facing less needles now :clap
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Hi Aneela,
That's really a great news,please do inform us about your ferritin level.
Take care,
ZAINI.
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Hi every1
its too long to be here....
i was unable to come on board due to net probleum. :wah
n now i want to let u know my cbc report...
inshallah ill try to post here my all reports.....
01.09.07
platelates: 95
HB 12.9
Differential (wbc) 49.6
Wbc 3.4
09.09.07
Platelets 107
HB 10.6
Differential (wbc) 48.2
Wbc 4.1
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Hi Aneela,
What about your ferritin level?did chelox help?
ZAINI.
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Hi Aneela,
Ask your doctor about Vitamin K for increasing those Platelet counts. It did wonders for me.
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i havent check my fretin yet
cause doc hasnt told me....
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i had my cbc on 30th sep
results r.....
hb 11.1
wbc 4.0
netro 47
plts 136
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It's good to see your white blood cell count has stabilized and that your platelets have risen. I hope your ferritin level has also decreased when you next get tested.
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sallam zaini
I just wanted to ask u that right now
How much times zainab takes desferal
N how much times she take ferriprox??
Cause according to my knowledge desfral
Effects more than tablet..
N according to doc im taking only two days
Desferal n five days chelox,,although my
Feretin is pretty much high n im much older than
Zainab…
Should I increase my desfral days???
Im also conscious to deacrese my feritin..
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Hi Aneela,
How much Desferal are you taking in each session amd are you taking Vitamin C with it too?
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Hi Aneela,
Zainab takes ferriprox thrice a day,meaning 1500 mg daily,and desferal thrice or sometimes twice a week,2 viles each time.what exactly is your ferritin?
ZAINI.
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hi
im taking 2gm 2 days a weak n im very careless in taking
vitamin c...
zaini
i hav mentionbefore in another thread
that my ferritin is toooooooooo high
10095 :wah
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Hi,
Are you taking 2 grams each time or total 2 grams,i think you should increse your dose aneela,see doctors can't do much when you yourself are not compliant with your chelation ,i think with your ferritin you should be taking desferal 4 times a week,and why don't you start ferinil or ferriprox?if your counts are not low,this combination therapy will really help,your ferritin is veryyyyyyyyyyy high,and what about your sister?what's her ferritin?i think you should take it seriously,you are educated enough to know the harms this iron overload will do to your body,please don't take it lightly,it can and it will definitely affect your heart,and we know that heart failure is a very big reason of loosing lives in thals.And about Vitamin C,it's not such a big deal,when ever you start your pump,take half tablet of CaC 1000,it will supply your Vitamin C as well as calcium.
TAKE CARE.
ZAINI.
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Hello,
I agree with Zaini, but with the Vit C thats alittle too high to be taking that dose...I would start on 250mg everytime you chelate...Also if you chelate properly your ferritin wont be as high as it is...
The combination therapy is one of the best treatments that is available at the moment...
I strongly suggest you do what Zaini has suggested... You stated that you are educated. Well we dont want to hear any more bad news!!!!! Its time for us patients to do what is best for us and prove everyone else that thinks that we wont make it past a certain age wrong...Well I certainly have proved a doctor wrong...So I am sure that you all can as well..
Bye the way my ferritin is still in the low hundreds and i am not on combination therapy just the Ferriprox..
Take care
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HI Smurfette,
How you doing? the thing is that half tablet of CaC 1000 contains 250 mg of Vitamin C,it's just the name of this med that says 1000,it doesn't actually contain 1000 mg of Vitamin C :),one full tablet contains 500 mg ,that's why i suggested half tablet to be taken.
LOVE ALWAYS,
ZAINI.
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my dear friends
zaini im taking combination tharpy
with CHELOX + DESFRAL
n im trying to take 4 days 2gm
but right now i take 5 days chelox n 2 days
desfral
hop i clear all the things
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Hi Zaini,
I am very well thank you...Thank you for the explaination about the Vit C...How is Zainab doing?..she is so cute in the pic in her school uniform...
Rani pk, you should try and use your pump alittle more than 2 days if possible... Can I ask do you use your pump while your not taking the Chelox or do you take the Chelox and then pump? I am just curious...
Thank you.
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yes smurfette
when i take chelox i dont take
desfral n plsssss pray 4 me...
i want to increase my desfral
days...
by the way i want to share that i hav
started chelox frm 29th june n now
im curious that what would be my
feritin...
but i also want to tell u all that my doctor
says that dont bother what report comes...
i dont understand that if reports r not
telling truth than how v know that whats going on.... :dunno
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Hi Aneela,
It's not just one report that tells us what's going on, but rather the trend of reports that tells us a better picture because it is possible that something caused a fluctuation during a particular test.
So you would need several S.F tests over some time that will tell you if your S.F is increasing or decreasing.
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Aneela,
I agree with what sajid said in his post..you just cant rely on one result..you would have to have a few test to determine weather its working or not...
I really cant remember if I had desferal with Ferriprox, its been about 1.5yrs since I have worn my pump!!! But am still on ferriprox but not the original dose I started off with...I take 4-6 tablets a day...seven days a week...
Take care
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hi 2 all
i had my cbc on 25th of oct
they r:
hb 8.9
wbc 2.7
netro52.8
plt 146
my doc had stopped my chelox due to low counts
4 atleast two weaks
inshallah when counts come to normal ill
able to start chelox again