Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: PositiveVibes on December 16, 2008, 09:55:35 PM
-
I am 57 kilograms and use desferal as a main medicine and some days I take Ferriprox- 8 pills per day.Last time my ferretin level was about 1400 . Recently, I have read much about desferal dose and the usual recommended dose is btw 25 & 60 mg per kilo. But actually this is very wide range .. and I just want to ask u if you know what is the exact dose for my kilograms and my current ferretin level .
thanks :wink
-
Hi Rozitka,
According to Novartis, for your ferritin level, you should be using about 1500 mg per day (25 x 57= 1425).
http://www.novartis.com.au/PI_PDF/dsf.pdf
Dosage:
The lowest effective dose should be used.
In most patients average daily doses of 20 to 60 mg/kg body weight are adequate. Patients with a serum ferritin level of less than 2000 microgram/L require about 25 mg/kg/day. Patients with a serum ferritin level between 2000 and 3000 microgram/L require about 35 mg/kg/day. Patients with higher serum ferritin levels may require up to 55 mg/kg/day. It is inadvisable to regularly exceed an average daily dose of 50 mg/kg/day except when very intensive chelation is needed in patients who are no longer growing. If ferritin values fall below 1000 microgram/L, the risk of Desferal toxicity increases. Therefore, it is important to monitor these patients particularly carefully and to consider lowering the total weekly dose.
Note that the doses recommended represent the average daily dose. Since most patients receive the drug on less than 7 days per week, the actual dose per infusion usually differs from the average daily dose (e.g. if an average daily dose of 40 mg/kg is required and the patient receives the drug on 5 days per week, each infusion should contain 56 mg/kg).
Your weekly dose of desferal should be around 10 grams total.
It is difficult to be completely accurate with a recommended dosage because the effect of desferal differs depending on how long you take it each session. The longer you take desferal at one time, the more effective it is even if the dose is the same, so 1.5 grams taken over 18 hours will chelate more iron than if the same amount is taken over 12 hours. Because you are also using Ferriprox, you can have chelation going on 24 hours a day. It's suggested to take Ferriprox during the day and desferal at night. This combination is very effective at lowering iron and especially heart iron.
And a belated happy birthday to you. :wink
-
Thanks Andy!! :thankyou
Now I will talk to my doctor explaining what u have posted about the desferal dosage and we'll set the best one for me :) I am also thinking of havind 24hours desf. as I have read here on the site about the good results .. ;)
-
Rozitka,
Your iron levels are really good, especially since you have had some antibody issues - you have done a good job chelating.
Sharmin
-
thanks sharmin ! :) sorry, but I could not get what you said about some antibody issues... I think I don't have some antibody problems.. may be you have understood me wrong or I can't undestand it now hah
:wink
-
Hi Rozitka,
Whoops, I had remembered when you first came on the site you had mentioned that you were having hemolysis and yellow eyes and that you were using prednisone for it - I just assumed that it was because of antibodies. I am glad that you don't have antibodies - they can be difficult to deal with. I hope that your issue with the yellow eyes has resolved. I also hope that you had a great birthday:)
Your ferritin levels look good - it shows that you have done a great job chelating. Keep up the great work :thumbs
Sharmin
-
Hi Sharmin,
Yes you're right I have some problems with so called "yellow eyes" but in fact i have never been tested myself for antibodies or how it should be said.. I really don't know what is to have antibodies ..
But the problem is still in existence.. 2 days ago I had blood transfusion after that immediately I got my eyes yellowed.. It happens almost everytime after having transfusion, then they strat getting more normal, but still vague ( light yellow) .. I do not know what is the problem.. my doctor says it is normal since I have thal. and it is a common thing among patients.. but.. I don't know.. I want my eyes to be as the normal person one's. As I was a child , I don't remember to have such problems .. :rolleyes
-
Rozitka,
Is it possible for you to find out how old the blood is that you're getting? I am wondering if it's not as fresh as it should be and that is causing hemolysis after the transfusion.
-
Andy, the blood I get during my transfusions is around 3-4 days usually . Monday when I got it it was at its 3rd day .. and even that I got my eyes yellowed. :( How many days should the blood be ?