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My MDS with autoimmune problems

Posted: 16 Jun 2015 01:27
by Kes
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.