Thread: EPO worries
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Old Wed Sep 25, 2013, 06:44 AM
Mseth Mseth is offline
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Join Date: Sep 2013
Location: New Delhi, India
Posts: 186
Chelation

Hi Birgitta-A,

Yes, its the adverse effects that worry, even of Hb corrects, will any new problem occur due to the medicine, or what if neither the Hb corrects, yet some other adverse effect occurs. Its great you did not have to face anything major except the fever, but it must have been a worry.!!
Were you on chelation during your tx dependent period? How was the decision to start taken? I understand Ferritin is not the most reliable indicator, my mothers ferritin was 980 before even the first transfusion, shot upto 2100 after 4 units and then started to come down. In India, we can order lab tests on our own, so we tested Ferritin a few times but the doctor did not seem interested. The doctor said he would suggest when to start Ferritin testing, he does not want to track now. Chelation he said could start after about 20-25 units, but I read that some other tests shud be performed like an MRI etc before decision is taken. She has already had 16 units since dx and may be approaching the time for start of chelation therapy. She has been taking IP6 supplement, hope it helps to some extent. Any experience and information you and any others on the forum can share will be greatly appreciated. Thanks in advance.

I am also wondering if i should start another thread as this thread was originally for EPO? I did not find other threads on iron overload giving this information
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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