Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: diab on October 03, 2012, 06:50:23 PM
-
Hey Thals :)
I am new to this forum.
I am 26 years old suffering from Thalassemia major since I was born :)..
I used to use Exjade as for chelation for 4 years and it really helped me very well! the ferritin level went extremely down from 3000 to 1200. however, the effect of this medicine started to diminish by time, in addition, to be honest! I couldn't bear the taste of the medicine ^_^! .. so I decided to get back to desferal..
I read about the recommendation for splitting the Exjade dosage so it work 24 hours, it is a smart tip! I was wondering if you have such recommendation for Desferal usage??
Thank you in advance!
-
Hi diab,
Welcome to the site .
Congratulations for reaching at 1200 Fe level.
Desferal toxicity increases when ferritin level is around 1000.
If you split the dose of exjade then you can tolarate the taste of it. I too feel it is difficult to dilute it. Add some soft foods with it , u can find info on that on this site.
Again Welcome
-
Thank you Hanumant,
Unfortunately I am going up with Fe level these days, but still in the range of 1500 (Relatively low).
I believe in what I am doing .. I believe faith in what we do is so important beside of the scientific facts we hear about.
I will continue surfing the site and getting benefit of other's experiences.
Are you telling me guys that Exjade is better than desferal anyway? or it depends on the situation or the specific condition of each patient?
I know Exjade is more expensive, but I though the expense is only because it's much easier to use.
Should I combine with L1?
All the best,
Diab
P.S. If you can post some links to must read posts in this forum please do
-
Hi Diab,
Your ferritin is low enough where you should be able to control it with Exjade alone...if you can tolerate it. You might want to try splitting the dose and trying it with different soft foods, to see if you can tolerate the taste. I have hear many reports from people whose ferritin level was stuck and wouldn't go down, but once they split the dose, it finally continued down to under 1000. If you have decided to take desferal, you can use it by itself or add L1 also. At your ferritin level, your approach can be very flexible, as long as you make sure you are regularly chelating. Keep in mind that desferal only works while you're using it, unlike the oral chelators which do chelate for some hours after ingesting.
-
Thank you Hanumant,
Unfortunately I am going up with Fe level these days, but still in the range of 1500 (Relatively low).
I believe in what I am doing .. I believe faith in what we do is so important beside of the scientific facts we hear about.
I will continue surfing the site and getting benefit of other's experiences.
Are you telling me guys that Exjade is better than desferal anyway? or it depends on the situation or the specific condition of each patient?
I know Exjade is more expensive, but I though the expense is only because it's much easier to use.
Should I combine with L1?
All the best,
Diab
P.S. If you can post some links to must read posts in this forum please do
Hi diab,
Combo of L1 & Exjade is new but here some doctors are prescribing it. So , it can be done with strict weekly observation of Thal. specialist.
I firmly believe that Desferal is better than Exjade if you can take it regularly. And Yes, The combo of Exjade and Desferal is also taken by many including me.
But above all, if u will split the dosage of Exjade it will be easy to use, taste, drink.
-
Thank you Andy and Hanumant.
I will monitor my iron levels constantly during the next month by using a combo of desferal and L1, if I see that the results are not that promising I'll go back to Exjade immediately and tolerate its taste by splitting the dose and use it with different soft food as others wrote in this site.
Once more, thank you so much :)
-
I'm getting good results with split dose of Asunra/Exjade, doing since past 4 months.
So definitely try it.
-P.