Quote:
Originally Posted by mskari85
So, I have not yet been diagnosed with Sjogrens and I was in a bit of denial that I had it because I don't have the traditional dry eyes, dry mouth. But I recently read a book about Sjogrens and it was like my entire life made sense to me. Chronic bronchitis, sinus infections, dry cracked lips, watery eyes, choking on food, anemia, chronically dry skin - MY WHOLE LIFE summed up. And now this small fiber neuropathy taking over.
Here's my problem: I don't have the antibodies and I have RA, so my rheumatologist is dead set on me not having Sjogrens. But I sincerely think I do. How do I fight her for a lip biopsy? Do I just need to get a new rheumatologist? I am so annoyed that I have to sit over here and diagnose myself while I worsen.
And what does treatment for Sjogrens look like as far as neuropathy is concerned. Do DMARDs really do anything for neuropathy? Is the only option IVIG? I just need a dang diagnosis so I can go forward.
Thank you!
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Mskari, I have been asking for a lip biopsy but my rheumatologist and a colleague of that rheum all refused to do a lip biopsy where there is nothing else. I have full body Sfn but no positive Ana or dry mouth. I think that sjogrens primarily involves B cell activity (I think from memory so don't quote me). If this is the case there are particular drugs that target B Cell proliferation specifically. I think the key one is rituximab. This one has already been mentioned in a previous post. And of course there is the ivig. I think it would be helpful to know. With no other key 'markers' such as the eyes, and mouth issues and blood to go on it seems to be the norm that rheums will refuse to do a lip biopsy