Quote:
Originally Posted by en bloc
Thanks for the link.
I don't see SVID mentioned. Your MRI was dismissed, if I remember correctly as being non-specific. Do you have the actual report from the MRI? If so ,what does it say? I went back to posts from long ago and you reported that it only showed SVID that matches your age and stage...no lesions. But I don't know if this was what the doctor had told you then (and we all know how they like to minimize findings at times) and now you have seen the report and know more.
But honestly as I said before to help put your mind at ease a bit, SVID doesn't have many symptoms reported, except dementia/memory/etc in significant cases of SVID. It doesn't create a major CNS condition. I interpreted that article to be more about other, more serious, CNS conditions. And although they use immunosuppresion for serious CNS involvement, Rituximab is not in this class, per se. Rituxan is a biologic agent for monoclonal treatment, to target B cells...it is not a general immuno-suppressor like Imuran, Cellcept, Cytoxan, etc. And I just read an article from our National Institute of Health on Rituximab for CNS of primary Sjogren's and it was didn't have great results ( Rituximab in central nervous system manifestations of patients with primary Sjogren's syndrome: results from the AIR registry. - PubMed - NCBI)
I would just wait and see what the MRI finds and see what the neurologist has to say (not that you were very impressed with her dismissal of your condition)...maybe ask for a second neuro opinion if you are permitted that in your system.
But don't jump with the Rituximab until they can tell you what symptom(s) it will improve (and you find something confirming this online). Because your vertigo is obviously from something else (Sjogren's related for sure, but not SVID), and this is the most debilitating symptom for you, if I'm not mistaken.
I so wish you can get hooked up with someone that has more experience with Sjogren's. Maybe the new rheumy (to replace the retired one) will have more knowledge on this subject...let's think positive that he/she will and help get you the treatment you need. Do you even have a follow up appt for a new rheumy? |
Enbloc - here is the letter for your perusal if you would be so kind. Personally I would rather be allowed to try Cellcept/ Mycophenolate at this stage. Followed by the option of IViG - which has never been mentioned to me once by rheumatology or neurology.
"Labial gland biopsy fulfilled Cheson's criteria for Sjogren's Syndrome and overall I think this is a likely explanation of her symptoms. She has a long history of dryness (eyes,mouth and vaginal) for which she uses symptomatic treatment. She has also recently developed constipation which, although I would not associate with SJS, again maybe explained by reduced exocrine secretions. She complained of night sweats but her main symptoms are her presumed small fibre neuropathy and also her "disequilibrium".
"Opinion and Management"
"I would think we now have a firm diagnosis of primary SS. The likely major organ manifestation is neurological. I note she sees Dr (neuro) and has an appointment to go back in mid October. I note her MRI in (previous hospital) early 2015 showed some non-specific white matter changes consistent with small vessel disease. SVD is certainly something one might see in primary SS. I have requested an MRI and in view of her night sweats, CT of chest abdomen and pelvis. I think in terms of her neurology the 2 main questions are (1) does Dr (neuro in same new hospital) agree that what we at seeing is consistent with primary Sjogrens Syndrome and (2) is there currently active/ progress neurological disease. If the answer to both of these is positive then we should be considering further attempt at immunosuppression, perhaps with Rituximab"
"Follow up - 3 months"
"PS Dear (neuro), please see my questions above. I would be grateful if I could have your opinion regarding these. KR (rheumy)"