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I have small fiber neuropathy confirmed through two skin biopsies at Duke. It's been considered idiopathic but neurologist and rheumy have been "suspicious" that it might be autoimmune related.
I think the primary reason for this is because of all the cause related tests that have been run, one of the few that really stands out is a CONSISTENTLY positive ANA. This has ranged from a moderate positive (1:640) to the HIGHEST positive titre on Duke University's reference range. I believe it was a 1:2560. The treatment has always been lyrica, Cymbalta, and plaquenil. The logic behind the plaquenil is, I think, that if there is something autoimmune going on it may suppress or alter the immune system enough that it may in turn help with the neuropathy. Well, I've been on it and the Lyrica for quite some time (at least a couple of years) and am still frequently ravaged by this SFN. It typically comes on in what I refer to as "flares". That is, it might behave for days or weeks at a time with little pain, and then come on badly--intense burning anywhere from feet to upper legs, with some autonomic dysfunction. The only other thing else that they have really offered me to try is an 8 week trial of prednisone--40 mg for two weeks and then 20 mg for 6 weeks. I haven't done it yet. I get frustrated when I read about what I perceive to be some success with IVIG for small fiber neuropathy that is autoimmune related or maybe even idiopathic, but this isn't offered as an option. The doctors claim that the Prednisone should be a good indicator as to whether the IVIG would help, but I don't know what to think about that. Anyone with any thoughts or suggestions for me based on what I have described above? They would be greatly appreciated! I always feel like they (the docs) must be missing something or not taking somethings into consideration. Thanks in advance for any input! |
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"Thanks for this!" says: | St George 2013 (05-11-2016) |
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