Quote:
Originally Posted by davidl
half go at my Duke Neuro's instruction. Did 20 mg for two weeks and then was supposed to do 10 mg for 6 more. Saw no improvement after 2 weeks and thought I might be having some side effects (which turns out I don't think the prednisone was causing), so I weaned off.
Now he wants me to do a 2 week at 40 mg trial and then 6 weeks at 20 mg. He said a combo of the higher dose along with the fact that I was only on the first trial for two weeks may make a difference this time
I'm pretty convinced that my SFN is autoimmune based considering my ANA is consistently at least moderate positive and last time it was checked was the highest positive on Duke's ranges. That, along with the fact that I have psoriasis, there's something abnormal about my capillary beds under my fingernails, and because I have had small pleural and pericardial effusions in this past. I think all of these pretty strongly point to an autoimmune process as my culprit, and I think the neurologist thinks it's highly likely as well but still, I believe, he keeps the official diagnosis as "idiopathic'
I guess I'm skeptical of the prednisone and don't like the idea of taking it. Then, when I read a lot of good things about IVIG for small fiber neuropathy I get frustrated.
Just wish the IVIG was an available option at this point. But I guess I might just do the prednisone trial and then, if it does not help, insist I want to pursue IVIG and see what happens.
I see him next week so we'll see what comes out of it.
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I'm currently on Prednisolone 15mg after a week on 20mg. Reducing by 5mg per week until weaned off in time for a gallbladder removal. I have confirmed autoimmunity (hypothyroid and RA) but no one has yet been able to confirm my SFN so I guess it is idiopathic too - or else part of my RA even though this is currently inactive in terms of synovitis. My ESR was high at 70 a few weeks ago and I'm not able to tolerate any other immunosuppressants to date. However my nerve conduction tests, skin biopsy and Lumbar puncture and serum autoantibodies have all been all somewhere between negative and equivocal so the neurologist was inclined to be dismissive ten days ago.
The Prednsilone seemed to help with the widespread and horrendous nerve pain at 20 mg but now at 15mg it's come roaring back and is frankly excruciating overnight - and I have a high pain threshold. I'm worried by this as Pred makes me very anxious and causes my gastritis to gnaw away and makes me eat more to try and soothe my digestive system. I don't want to get stuck on it while everyone drags their heels trying to decide whether or not I meet the tight NHS criteria for more immunesuppressants. I wonder whether I should just try to weather the storm of pain somehow and keep telling myself it's probably all a product of my overactive imagination. I hate all these drugs with a vengeance - especially steroids for not giving me a proper break! Sorry not much help but yours does sound as if it's an immune mediated neuropathy too.
I'm told by my GP that it's not actually a neuropathy at all mind you so maybe I'm in the wrong place - could be Raynaud's/ CREST/ Scleroderma or Vasculitis? Has your ANCA been done yet?