My MDS with autoimmune problems

Folder for messages about the potential link between auto-immune disease and MDS. Post about your personal experience with auto-immune diseases - such as chronic joint inflammation, low platelet counts of unknown cause, blood vessel inflammation, muscle pain in hips or shoulders, artery inflammation, or psoriasis.

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Joined: 14 Jul 2012 13:05

My MDS with autoimmune problems

Post by Kes » 16 Jun 2015 01:27

I have had serious joint problems especially shoulders, hands, feet and ankles. I also have reynaurds phenomenon, IgA nephropathy, repetitive ulcers, dry eyes and mouth. I had psoriasis for many years from around the age of 19 but it's not a problem now. I've been on ciclosporine for 18 months but this has not stopped the pancytopenias. I've been neutropenic and had sepsis several times and 3 times in the last 2 years. The team are now looking to another kind of immunosuppressive but need to secure funding for this drug. I have been on high does steroids for 2 months which has really helped with the joint pain which is a godsend but of course also has its own problems.
I was diagnosed initially with RA. Now I'm told it RCMD with hypocellular marrow. It seems I also have a big autoimmune component to my MDS with lots of accompanied joint pain[/color]
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