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Old 09-16-2016, 01:10 AM #1
stillHoping stillHoping is offline
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stillHoping stillHoping is offline
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Join Date: May 2015
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Hi MAT,
I'm glad you finally got good doctors that takes you seriously and I hope that with the Sjs diagnosis you would be able to get proper treatment.

Regarding rituximab, I got it now because it was found helpful when I had it for Lymphoma a few years ago. I found very little documentation about its effect on SFN and POTS. For what it's worth, in my case it helped tremendously my POTS, fatigue and brain fog, and it somewhat improved my other SFN sensory & autonomic symptoms. It took a while to work, the main effect lasted for 2-3 months and then started to fade. I got a second course and waiting hopefully…
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Old 09-16-2016, 02:30 AM #2
MAT52 MAT52 is offline
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Location: Scotland, UK
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MAT52 MAT52 is offline
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Quote:
Originally Posted by stillHoping View Post
Hi MAT,
I'm glad you finally got good doctors that takes you seriously and I hope that with the Sjs diagnosis you would be able to get proper treatment.

Regarding rituximab, I got it now because it was found helpful when I had it for Lymphoma a few years ago. I found very little documentation about its effect on SFN and POTS. For what it's worth, in my case it helped tremendously my POTS, fatigue and brain fog, and it somewhat improved my other SFN sensory & autonomic symptoms. It took a while to work, the main effect lasted for 2-3 months and then started to fade. I got a second course and waiting hopefully…
Thanks StillHoping - I'm glad it worked so well. My UK cyber friend is on Rituximab for her Sjogren's and it made a big difference to her as well but the effects have dimmed now and she's waiting impatiently for a rheumatology appointment having had hers postponed by three months because of staff shortages. We will see. I'm actually minded that I'd prefer to try Cellcept for now unless I turn out to have lymphoma - which is looking unlikely I'm glad to say!
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Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases
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