New to Forum!

Hi, I have been reading this forum for a long time now as a guest, finally decided to jump in. Little bit about me and my way of asking for help regarding a little concern I have. I am 24 years old. Have Thal-Major. I get blood transfusions every 3 weeks. Lately my requirement has begun to increase, used to get 2 units and now get 2.5 units, sometimes 3 full, sometimes back to 2 units. I have used deferral since birth till Exjade was approved in the U.S. And now take trail version of Ferriprox. (Reason noted below)

I recently had my T2* done, for the third time. First was heart score was bad. I switched to Ferriprox (as per doctors recommendation)  8 months later, score got better. And now about another 8 months later I am finally above the 20msec mark. Question is in that latest MRI, they found a T2 hyperintense lesion on/in one of my kidney. I was recommended to have a ultrasound done, which I will have an appointment for in 2 weeks. I don't know whether I should be worried or not. Could this be a side effect of the Ferriprox. I have only been using Ferriprox for a year and half now. Something like this is not in my family history nor have I ever had something related to this. Am I getting worried for no reason? Thoughts?

Hi Ironman0786,

There is nothing in the literature to suggest kidney lesions with deferiprone. It is known that Exjade can cause kidney disease and even  renal tubulopathy. This is the only chelator with any connection to physical kidney problems. Kidney stones can also cause lesions, so in thalassemia it will often be stones that are the cause. I'm glad to hear Ferriprox was the answer for removing heart iron. I hope its approval for all patients will soon happen.

Welcome to the forum Ironman0786,

It is great to have you join.  I am glad that your T2* score is improving - oral chelation is very good at removing iron stores from organs. 

I hope that your kidney issue turns out to be not concerning,

best,

Sharmin

Thank You for the well wishes, I will find out in 2 weeks. I was also thinking it might be stones, but I don't have pain. However, frequency of using the restroom, I did notice, increased, in the past 9 months, I thought it meant I might have diabetes, since there is a family history of that, at a "young age" however all glucose test seemed normal. But then again I do get really sleepy after eating something sugary.

Turns out to be a water cyst. For now it is just going to sit there.


BTW wonderful news: FDA has approved Ferriprox in the USA. Congrats to all the USA patients!

Hi, I had a question to all long term Ferriprox/ Deferiprone / L1 users, about its side affects, I think ever since I stated this drug a year and a half ago, I am seeing a lot of my hair falling, every time I comb my hair I see them fall on my shoulder and stuck in the comb, every time I take a shower, a hair ball enough to clog the bathtub is formed. Could this be from the L1, or could it be a side effect from another drug. Thanks in advance for any information you come up with.