hi cyclelops, i just saw your post from 5/2010. i'm on the fence about IVIg, too. it was prescribed in march [insurance approved 'till 9/2010]. i have small fiber + autonomic neuropathy. symptoms are mostly burning and it depends on the day -- it comes & goes. i'd like to try IVIg but i am concerned about the risks. i saw a doc @ hopkins [not birnbaum, although he is next on my list] and that doc felt that IVIg is relatively safe and i should try it. my neurologist in NY feels it can turn my condition around. i don't test positive for sjogren's blood test, but i do have elevated polyclonal protein, which suggests autoimmune or inflammation.
just wondered where you are in your thought process of IVIg and if you've decided to try it.
best,
kate
Quote:
Originally Posted by cyclelops
Oh, I do understand Louie....SjS remains poorly defined. Prognosis has eluded me totally. It is hard to make any plans.
Yes, it is some combination of ganglionopathy, and small fiber neuropathy, and eventually, seroconversion for some of us. It took 6 years for me to seroconvert.
You sound in the same boat as myself.
It seems that Sjogren's Syndrome is the 'fibromyalgia' of the autoimmune world.....there is no real agreement on what it is, what criteria really define it. The criteria are broad. If you have +SSA or SSB, you can definitely say you have this entity. I am neither, altho I meet all other criteria, which I don't put a lot of credence in. Sicca is caused by so many things.
In my opinion, it is an autoimmune neurological disease. I am on the fence regarding ivig. I won't do -mab drugs.....too untested, no real long term benefit documented and substantial risk. Prednisone for me is contraindicated due to huge family history of osteoporosis.....and I don't think I metabolize drug very well, which makes some of the chemo choices pretty risky.
I wish I could tell you there was something in the pipeline, but there isn't.
As far as 'slow progression', I am not so sure about that. I guess it depends on what is 'slow'.
It has been a huge challenge to maintain a positive attitude with this disease. Hopkins had nothing new to offer me over what my tertiary medical center was offering. My center is very up to date....albeit, some what reluctant to settle for the payments they negotiated with my insurer, which is leaving me in somewhat of a limbo right now.
I know, there is really nothing much they can do. It is up to me to survive, and try to salvage what quality I can from this situation.
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