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Old Mon Oct 10, 2022, 10:59 AM
triumphe64 triumphe64 is offline
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Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
Quote:
Originally Posted by Hopeful View Post
Hi PKumar,
I am sorry that your wife is struggling with this disease. It is encouraging that she had a response in some of her blood lines. Hopefully the platelet line will follow soon!

I would encourage you to use the search function on this forum to read others experiences with Danazol. It was used in a bunch of clinical trials for people with TERC/TERT mutations a few years back. This mutation causes short telomeres. You can follow links in the posts to view the clinical trials and results. The clinical trials also have posted side effects to the drug.

If you have any trouble finding the links, I?m happy to help sort through the information.

I hope this helps!
I had forgotten about the TERC/TERT mutations.
And indeed, Danazol increases telomere length.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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