Hi Hopeful,

I too am very glad you came off the Cymbalta. You certainly had a horrible experience doing so though. It's one of those eye openers to realize just how dependent our bodies become to a medication...scary!

I think I remember you being checked for Sjogren's a ways back and that doctors thought you had an autoimmune process going on that was the cause of your SFN...just couldn't confirm. SO MANY with Sjogren's test negative via blood work...up to 40%. But anyway, IVIG is NOT approved by the FDA for use in Sjogren's alone, so I'm sure he must have tagged the SFN on the diagnosis (as he should have) in order to get approval.

I'd be very interested (via pm if you prefer) to hear about your experience at the Hopkins Sjogren's Center. I have seen the neuro/rheumy there for years (since before there was even a Sjogren's Center). Some think he is quite cocky...LOL I think he's great, but again I knew him before he was at the center so we've had a long relationship...and plenty of disagreements...lol Something tells me, it's the same person.

Anyway, back to Sjogren's. It's great that you are being treated even though you tested negative. Like I said, 40% test negative...even some of those with negative biopsy. I have years of negative blood work, but had a positive biopsy. There is NO really good test for Sjogren's. Do you have the dry mouth/eyes, fatigue, joint pain, etc?

I had the muscle biopsy...and yes a large scar. Just don't let them do the sural nerve biopsy. That WILL definitely leave you with permanent numbness from the site of the procedure, all the way down the side of your leg and part of your foot...and again, that is PERMANENT because they sever the nerve to take a large section.

I am NOT aware of muscle weakness with SFN. It is well known with large fiber neuropathy, but as far as I know, SFN causes the burning, tingling, numbness, etc (surface features). Glenntaj would know about this and muscle involvement with SFN...maybe he will pipe in. I have had the very type of muscle weakness you describe (hard to hold arms up to fix hair, or do stairs, etc). Did you have this PRIOR to any steroids or IVIG? Has it gotten worse since you began either treatment? You can get myopathy from high dose steroids...OR just the autoimmune disease itself. Mine would come in flares, so to speak...then resolve after time, until the next wave.

As for a repeat biopsy...I would ask if the IVIG and/or steroids will possibly skew the results. I know the steroids will, because it changes any inflammatory process and the lip biopsy looks for inflammation in the salivary glands. It would easily cause a false negative by masking a inflammation. So that makes me ask...where you taking any steroids when you had the first biopsy?? IVIG can also alter many tests (since it affect the immune system), so you'd need to ask your rheumy about how it would affect the biopsy and/or blood markers for Sjogren's.

I don't know of any connection between hives and neuropathy (SFN)...but that doesn't mean there isn't one. Again, Glenntaj would know. But it does tell me that you have a sensitive immune response, so I would make sure you ALWAYS use some sort of pre-med with your IVIG (Zrytec or steroids or both--but lower dose on the steroids). Have you noticed the hive episodes only AFTER you started receiving IVIG, or did you have hive incidents even before you ever got IVIG? Your immune system is directly tied to your allergic responses, so the IVIG could be playing a role in this.

You say the IVIG helps the muscle weakness. Does the muscle weakness start to reappear just before your next IVIG, then get better right after...or has it been better non-stop since you started the treatment and you assume it's improvement was from the IVIG? If the IVIG is definitely helping the muscle weakness, then yes, the MG should be considered...as IVIG is a treatment for that.

Also, does the IVIG help the burning, tingling, and numbness?