Thread: Tired
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Old Mon Jun 18, 2018, 11:37 PM
Susan Susan is offline
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Join Date: Sep 2003
Location: Chicago, Il
Posts: 101
Smile Tired

Hi Jen, I'm sorry to hear you're still pretty tired after being on Soliris for a while. What is your clone size? You don't have Aplastic Anemia or MDS - you had a bone marrow biopsy fairly recently? Are you on folic acid and iron?

I have a 99% PNH clone and before Soliris was available I went to part time work. That would be a good choice if you can swing it financially. Later I went on disability after massive hemolysis caused renal failure. (Hemolysis nearly gone since on Soliris and kidneys normal again). I strongly recommend you see a true PNH Specialist if you haven't yet. There are only a few in the country who have seen many cases. Contact aamds.org for a list of specialists. Only a specialist who has your full history can best help you look at all your options. It's such a very rare disease. If you saw one go back or see a 2nd one for a second opinion. Some patients get their Soliris dose increased and they feel better. There are drug trials now and upcoming for those who don't respond well enough to Soliris!

My PNH Specialist told me at age 46 not to have a bone marrow/stem cell transplant. With two perfectly matched siblings I still had only about a 50 to 60% chance of surviving the transplant. Not good odds. Then there are unpleasant side effects of having a transplant. It really is the very last resort.
Keep in touch and let us know how you are doing.
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AA/PNH Dx 1998, Warfarin, Soliris
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