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Old 10-15-2016, 10:57 PM
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en bloc en bloc is offline
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Join Date: Feb 2011
Location: Shenandoah Mountains, VA
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en bloc en bloc is offline
Senior Member
en bloc's Avatar
 
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
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Thanks for the update.

I felt certain this neuro would change her tune after learning of your Sjogren's Dx...and she did to some degree.

However, her fear of biologics/treatments may cost you in the end.

IVIG is KNOWN to help autoimmune based neuropathy/SFN and tons of documentation on this subject. The guidelines for Scotland use of IVIg is 4+ years old...and likely has been updated since that time. It is definitely worth inquiring about this. However, they typically don't approve such a treatment with 'clinical' only Dx...and would likely require confirmed biopsy showing SFN.

There is also plenty of documentation for use of immunosuppression in this type of condition...with positive results. Cellcept would be worth considering. Doing nothing will guarantee further progression...so trying something is worth at least slowing this progression. I don't understand her comments basically saying you can't be helped at this stage...that's an assumption with no logical documentation...especially since these meds have a history of helping. Otherwise, no one would be getting treated across the world...and that is just not the case. We ARE getting treated and it's helping. There is some damage that becomes permanent with Sjogren's, but certainly not all, as she seems to think. O hope you don't give up. Push for some sort of treatment (other than masking with Lyrica) to slow progression and reduce symptoms...at least TRY.
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"Thanks for this!" says:
glenntaj (10-16-2016)