Discussion Forums > Thalassemia Major

Question for Andy...

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Andy Battaglia:
If Exjade is to be re-challenged, it has to be with the understanding that he has to stay hydrated all the time. He's going to have to be the one that makes the effort. With that said, why not Ferriprox?

Lena:
Emby,

I just saw your posts. My guess is that if all tests done are within normal, you can blame it on exjade.
Really, what about ferriprox? Has your son even taken them and if not, why?

I wish you the best for your son,
Lena

Lena:
I am a little upset these days, due to my MRI getting worse:

T2* heart  31  (last year 34,2)

T2* liver    27  (last year  31)

LIC          1,1   (last year  1)

Although this year's rates are still within normal, they are worse than last year's.
I am trying to find out why and I think it is because in my combination therapy I let the desferal rate  drop and had it twice weekly together with ferriprox. You see, my ferritin was 37 and we thought we could afford it. But no! things proved that I could not reduce the rate. Something I have posted again and again in this site. Do not slow down. Now I have to double my effort in order to reach my former rates.  :wah

Emby:
Thank you Lena...... both my boys were happily on Ferriprox. My older one still takes it. H's liver showed that he had moderate level of Iron so his Dr said he should go on Exjade. I was happier just to stay on Ferriprox but the Dr said that because his ferritin was around 150, she didn't want the ferritin to drop any lower and that Exjade was the best option. I was happy with Desferal/Ferriprox combo but she was determined.
I'm sorry cos I know people do take Exjade, and it works for them, but I just have never felt comfortable with Exjade. I had researched it and there is something about the way it was sort of ''given out'' to the masses that irked me. As I said, it does work for lots of people but it didn't work for H....he is getting better and inshAallah there will be no lasting effects.

Thanks Andy....don't want to go back on Exjade. Within 6 months of being on it being at the hospital we only then realisised all the essentials he has been losing from his body, potassium, phosphate, vitamin k, sodium chloride, glucose. Kidneys playing up, liver gone weird, pancreas abnormal, stomach reacting, blood pressure sky high, blood not clotting as normal.  Restarting it would be.......   

Lena:
Thanks for saying all that about exjade, Emby.
I myself was on exjade one year ago and had terrible stomachburns and doctor gave me stomach pills in order to go on. Then, I made some search and decided on my own to stop exjade.
The truth is I was considering again now to start with it, but I am very reluctant. Thanks for all the info you put through.
I think I will stick to desferal/ferriprox (though a harder therapy it is.)

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