Quote:
Originally Posted by davidl
I have small fiber neuropathy that typically seems to come on in what I call "flares", often very intense, and then it might subside almost entirely for sometimes weeks at a time if I'm lucky.
I have psoriasis and also a positive ANA. It's consistently positive and the last time it was checked at was at the highest level of positive.
I sometimes think stress is one of my biggest triggers. Also, I sometimes think I notice a correlation between my psoriasis flaring up when I also have the small fiber neuropathy flares.
Bottom line, my doctors at Duke have suggested a 8 week prednisone trial. 40 mgs for 2 weeks, then 20 mgs for 6 weeks, before a taper. They have me diagnosed definitively with sfn through 2 skin biopsies. They also have given me a diagnosis of "mixed connective tissue disorder".
I have asked both my neurologist and rheumatologist about IVIG and they have said that the prednisone respone would be a good indicator as to whether IVIG would be effective, so I should try the steroid trial first.
Does this make sense to anyone? I am currently taking Lyrica, Plaquenil, and a low dose of Cymbalta but am getting eaten alive by the neuropathy right now and have been for a little over a week. Most of the calendar year it has behaved fairly well on the whole.
Just wondering what others think of this?
Thank you!
|
Hi David,
I'm glad I could reach out to you because your story sounds very similar to mine. I tried the same meds you're taking. My neurologist at Duke had me on prednisone for about 6 weeks. It is definitely worth a try. If you've ever had a steroid dose pack before and never had negative side effects, then this won't be much different. I noticed no side effects for the whole 6 weeks. Unfortunately, the prednisone didn't make a difference in my symptoms. On the plus side, if your neurologist decides you might be a candidate for the IVIg, he'll have to prove to the insurance company that you have tried and failed X, Y, and Z treatments before trying an extremely expensive drug.
My insurance denied me once in September, then my neuro appealed and they denied me again in the fall. I just had some more labwork and he's gona try a third time to apply for the medicine. Unfortunately, the drug to get set up at home was going to be estimated 14,000 dollars. But, the company who sells the drug actually has a financial aid application and they are very willing to work with you on helping out as much as possible.
Let me know how the prednisone goes. I read a study about the IVIg helping 10/11 subjects! (small study, but such a rare topic!)
-Jordan