Quote:
Originally Posted by en bloc
I have Sjogren's (and several other things), and it is the basis of my neuropathy (both autonomic and peripheral/SFN) due to attack on the dorsal root ganglia.
It's a bit unusual that an eye doctor (I'll assume he's an ophthalmologist) Dx'd the Sjogren's with just a Schirmer test. It is quite common (up to 40%) for patients to be sero-negative for Sjogren's antibodies, but then a lip biopsy is usually done to confirm the diagnosis. There is SO many causes of dry eye/mouth, which the most common being medications. I'm glad your eye doctor is addressing this, but a rheumy (which you need to see as well) may not treat with Plaquenil (first line treatment for Sjogren's) without first having confirmation by lip biopsy. Sjogren's is a systemic condition, so you should see a rheumatologist for complete treatment (not just eyes). Since you have other significant conditions, this is even more important that you discuss with both your rheumy and neuro.
Your neuro may feel that your SFN is from the Sjogren's (if he agrees with the Dx). Then other treatment options (like IVIG or immunosuppression) may be considered.
There are Biotene products for dry mouth that are available OTC. Be careful with the humidifier, as they required constant thorough cleaning when used regularly due to mold build up very quickly.
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Hello en bloc, thank you for your response! It has lots of great information. Can you share what treatment(s) you've had for your Sjogren's and your neuropathy?
I should have mentioned that I did see an Ophthalmologist who specializes in the treatment of systemic diseases that are associated with ocular inflammation. Also, I don't believe he made the diagnosis based solely on the Schirmer's test, as he did an extensive exam and we talked at length about my other conditions. Of course, this is his opinion and we reviewed other things that contribute to dry eyes like age, environment, meds, etc.....
Your advice about seeing a Rheumatologist is excellent, thanks. I have a call into my Neurologist to talk with her about the Sjogren's diag. and next steps. I want to stay in medical system she works in and will ask her for a recommendation for a Rheum Doc as well. If a lip biopsy is necessary to support his opinion, then I'll follow through on that, especially if it leads to more aggressive treatment.
Thanks again for your information and guidance!