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Old 11-08-2011, 09:49 PM #6
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en bloc en bloc is offline
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en bloc en bloc is offline
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en bloc's Avatar
 
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
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Quote:
Originally Posted by Liftyourhands7 View Post
Hi En Bloc,

I did have the blood test to check for sjorgens it was negative, I'm not sure I want to have lip biopsy, I hear it's painful and as you said could cause permanent numbness, I already suffer so much numbness, Can IVIG be used for sjorgens I have heard it's not used for this disease, my Doctor is talking about prednisone, but I have heard some bad things about that, also my sed rate is normal if I had sjorgens wouldn't that be abnormal? I'm headed to UCLA Medical center tomorrow, I am hoping they can shed more light on all of this. Thanks, Jan
The lip biopsy really isn't that bad (pain wise). I have some permanent numbness from it, but it's really a small area and not bothersome. Talk to them about what to expect.

IVIG is not FDA approved for Sjogren's alone and doesn't help with dryness issues anyway. The IVIG is helpful for neuropathy from Sjogren's and with a positive skin biopsy can easily be approved with most insurances. I did not find steroids to help my neuropathy pain (and mine is from Sjogren's) and I tried high dose IV (1 gram/day for 3 days) on several occasions over the last couple years.
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