Itp verses sle

I have primary sle and secondary Itp, recently my sle had been in remission but my Itp had been uncontrollable I have tried every treatment medication, rituximab nothing works and my body now rejects prednisalone, so I have to have ivig, I had my last one last week and my platelets are up to 93 which they haven't been for years apart from when I have ivig, but I have felt terrible all week exhausted, in a lot of pain well more than normal, my sjorgens has been really bad, butterfly rash very prominent, feverish, it just seems I get one back in line and it sets the other off, has anyone else experienced this?

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  • Sorry but I had to look up ltp - just for anyone else who doesn't know "secondary ITP is defined as any form of immune thrombocytopenia". I can't help but, as someone with a very neuro version of primary Sjögren's, I can sympathise with your drug related issues. I've not yet found a drug treatment that wasn't worse for me than the symptoms - although my symptoms may well be symptoms rather the drug side effects. Sjögren's can flare up regardless or even because of systemic treatments - there is no targeted treatment for it yet. So other things may improve but the Sjögren's continues to rear it's ugly head regardless. This is my experience of it anyway. Having infusions of plasma is bound to be extra tiring and fatigue is another inherent aspect of autoimmunity so any infusion or new drug could make your Sjögren's flare I think

  • Have you tried an infusion of winrho? Or son developed ITP when he was 17 yrs old. After steroids were ineffective, his hematologist ordered winrho. One infusion jolted his spleen back into order and he hasn't had a problem since. This drug is not without its side effects, but with close monitoring, you could be in the clear in a few days. The next step would have been splenectomy.

  • *Our* =)

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