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Old 01-05-2017, 12:05 PM #1
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
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MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
10 yr Member
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Originally Posted by JoannaP79 View Post
Mat, could you tell me if you are having treatment for the R.A? Is the cellcept supposed to be for all of it or just the sjogrens?
I ask as Cellcept has been mentioned for me but the neuro won't try it based on simply what I am reporting. The suggestion is I start entanercept (biologic) and for the A. S I have in the hope it manages what's attacking nerves. I'm holding off until I've made mind up about muscle biopsy. I'm too scared to have it which is why I keep going on about it in my posts! Your symptoms seem so very similar to mine bar the atrophy.
The Cellcept is for the RA type pain I have with my Sjogrens officially but I only got it because the rheumy registrar failed to read my neuro' letter telling him I shouldn't be taking these type of drugs! Then it was too late for him to completely backtrack as I'd started so he wrote that it was a four month trial as usually these neuro symptoms in seronegative Sjogrens would only be treated with the Gabapentin family - which I won't touch again! I have already had severe reactions to Methotrexate, Sulfasalazine,Hydroxichloraquine and Azathioprine so no more options will be offered after this he tells me. Unless I start getting organ involvement or Lymphoma in which case I will meet the NHS criteria for Rituximab. Hope this explains!
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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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