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Old 01-05-2017, 09:45 PM
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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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Certainly, they gave you the Cellcept for more than just RA pain. It is an immunosuppressant that covers many symptoms in the autoimmune disease process...including neuropathy/SFN, Sjogren's symptom mgmt, and even goal of remission!! Here's a couple articles about the use of Cellcept.


Conquering Sjogren's | Cellcept

Mycophenolate sodium treatment in patients with primary Sjogren syndrome: a pilot trial

I have experienced the heavy limbs, as you describe (when resting), but I could move them when I tried (which I guess you can, as well). They assumed the cause was the neuropathy. However, it did finally go away, so I hope yours does as well. You'll learn that many symptoms you get with Sjogren's will wax/wane over time. Symptoms may last for days or weeks or months and then go away as fast as they come on. There is no rhyme or reason for symptoms of Sjogren's...it's as if the disease has a mind of its own!! I can only suggest that you continue to use your limbs as much as possible (simple exercises) to keep the muscles strong. You don't want to add muscle wasting to your list of problems from lack of use. So the more they feel weak, the more you should use them to keep them strong.

I don't think the Schirmer's test is 'primitive'...but Scotland's way of performing the test may be...LOL Most ophthalmologists here in the US use the numbing drops to not only keep patients more comfortable, but then they get a more accurate test, since the tears aren't being produced from irritation. Done properly the test can show whether or not the patient is producing enough tears...and it is still an important part of the diagnostic criteria for Sjogren's...both here and in the European community. I'm sure the Schirmer's 'sucked' the way you had it done, but doctors here also perform the rose bengal, slit lamp, and various other high tech microscopic testing. But these tests do NOT show tear production.

I was hoping your update would have said you are experiencing vast improvement in symptoms. Sorry to hear it is not the case. But you are still early in the trial, so don't give up hope just yet. It takes a while to wipe out the immune system, and then for the inflammation to respond to this dramatic change.
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bluesfan (01-05-2017)