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Old 09-14-2016, 01:36 AM #9
MAT52 MAT52 is offline
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Location: Scotland, UK
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MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
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Quote:
Originally Posted by en bloc View Post
I understand your thinking on this, but you might want to repeat the biopsy if they are considering any big guns. Knowing if you truly have SFN (and the extent of damage) would be critical info before even thinking of taking IVIG or Rituximab. One important factor to consider is having a baseline (which you really don't have since the biopsy wasn't done at the proper location or in more than one site...not to mention your question of handling/transport, etc.) Once you start a big gun treatment you will never know the original amount of damage and/or if the treatment is working. This is one of the great benefits of this test is that is is repeatable (many times) to gauge progression of disease process or documenting improvement so you know whether to continue treatment. And of course, the test is very minimally invasive with just tiny punches of skin being removed and simple bandaids for dressing.

Also, I can't image they would start a big gun if you didn't have confirmed SFN from the Sjogren's. They don't use Rituximab or IVIG for SVID or autonomic dysfunction. And I don't think you have said you have any organ involvement either (other reason to use these big guns). So confirming the SFN is really important if they still want to even think of a big gun treatment.

Just food for thought.
Ps further to my earlier reply - I've recalled that my rheumy says that SFN of Sjogren's usually only goes so far and then stops and neither improves nor progresses - it is something sufferers just have to learn to live with. So, unlike SVID, it is not treated with big gun or immunesupnpresant therapies even when it is confirmed. Almost the opposite of what you have been told I think?
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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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