Quote:
Originally Posted by en bloc
Sorry to be late in reply. I'm so glad you finally have answers...and to be honest, I'm not surprised at the answers you received. Being that I have primary Sjogren's and ganglionopathy, I could see some of your history matching mine. I too am sero-negative for Sjogren's, but very positive via lip biopsy. Actually, my lip biopsy report says that there was so much loss of acinar structures and the degree of fibrosis was significant, that they considered it consistent with Sjogren's at end stage.
I hope they still follow up with checking for Scerloderma based on your ANA nucleolar pattern. As I told you before, it is possible to have overlap of autoimmune disease processes...and the member from Sjogren's World had both along with profound neuropathy.
There are actually many people with Sjogren's that don't have overly dry mouth. My mouth isn't that dry any more. I have times when it is more dry, and times when it isn't that bad. You should see a dentist though, as dental problems are common with Sjogren's and even slight bacterial changes in the mouth (from less saliva) can cause gum disease, cavities, etc.
Your new GI symptoms (constipation, etc) may be explained by some autonomic neuropathy...also very common with Sjogren's and ganglionopathy/neuronopathy.
I know you have tried various DMARDS, like Plaquenil without success and having many side-effects. I hope they consider IVIG for your symptoms and neuropathy...you would definitely be a good candidate. I have found IVIG to help Sjogren's symptoms and some of my neuropathy symptoms. However my neuropathy and Sjogren's was confirmed too late and therefore there was too much permanent damage for significant improvement with biologics and IVIG. But I do have less pain and I think it's has helped with slowing further progression. My autonomic symptoms also seem to be better managed, which I attribute to IVIG. With your new Sjogren's Dx and history of confirmed SFN, you should not have a problem being approved for IVIG...even in your location.
Please keep us posted.
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The treatments already tried - actually Plaquenil and methotrexate were brilliantly effective for me but severe allergic reactions made them impossible. I'm really hoping you are right about IViG being on the menu. I recall waiting for my lumbar puncture in the day care room of neuro ward for about six hours wedged between a couple of people having their IViG. Their symptoms were far less problematic than mine to begin with. But when I asked the neuro if this would be available for me to try too he looked startled and said no - not for RA with "mild SFN". This was a year ago.
I think it's probably too late for me now as the painful burning has gone and all is largely numbness and tingle with crawling and turning to stone sensation. But I'd still like to try it to help with the autonomic features. I will certainly ask the new rheumy. Would it have a better track record for Sjogren's neuropathy than Rituximab though?
The main drug friends with lupus and vasculitis recommend to me is Mycophenolate Mofetyl. It is a DMARD and supposedly helpful in preventing renal involvement - which I'm rather worried about given I have microscopic haematuria and a very large renal cyst and hypertension. I will let you know what is decided.
08-07-2016, 01:28 AM
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