Zap Posted September 11, 2013 Report Share Posted September 11, 2013 I found this through some random research and was shocked. This possibly explains why positively I responded to steroids in the past. I followed up further by writing one of the doctors to get treatment protocol information. I'd be happy to discuss what he talked about if there is any interest. It basically involves a multi-month course of steroids that are eventually tapered. The basic idea was that they see two SFN case types - many genetic which won't respond to steroids OR other idiopathic, related to inflammation, and respond to steroids. For the genetic type cases, I have researched and found a novel medication that may provide a quality-of-life improvement without the cardiac side effects. This is especially important, as many with SFN don't respond well to existing meds like Gabapentin and Pregabalin. I think we will see into the future that SFN is one possible root cause of POTS / dysautonomia. Maybe we can also see at least some cases that respond to this few-month treatment, and have hope for partial/substantial remission of symptoms. I know at least one other forum member has had this response. Here's the PubMed link (http://www.ncbi.nlm.nih.gov/pubmed/16519781) J Peripher Nerv Syst. 2006 Mar;11(1):47-52.Acute steroid responsive small-fiber sensory neuropathy: a new entity?Dabby R, Gilad R, Sadeh M, Lampl Y, Watemberg N.SourceDepartment of Neurology, Wolfson Medical Center, Holon, Israel. dabbyr@netvision.net.ildabbyr@netvision.net.ilAbstractSmall-fiber neuropathy is often idiopathic and commonly follows a chronic course. Treatment is often effective in treating the core symptom of pain, but it has no effect on the pathologic process. We describe four patients with acute small-fiber neuropathy who responded dramatically to steroid therapy. All patients had acute onset neuropathic pain, normal nerve conduction studies, and evidence of small-fiber dysfunction in quantitative sensory testing and skin biopsy. Symptoms were distal and symmetrical in three patients and generalized in one patient. In two cases, the neuropathy presented as an erythromelalgia-like syndrome. Marked clinical improvement occurred 1-2 weeks after oral prednisone therapy was initiated. Three patients remained symptom free, and one patient experienced recurrence of neuropathy after prednisone was tapered. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted September 11, 2013 Report Share Posted September 11, 2013 Nice find Zap.Thanks for sharing. I'm sure this will generate a lot of interest on dinet.I'd be quite interested in the details of the protocol treatment, if you would be willing to share - here or by PM. SFN is one of those things I question in my case, but have't seen the "right" doctor yet (am waiting for an appointment though).Alex Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted September 11, 2013 Report Share Posted September 11, 2013 Here's another article along the same lines http://jnnp.bmj.com/content/72/4/540.full Acute small fibre sensory neuropathy: another variant of Guillain-Barré syndrome?and another onehttp://brain.oxfordjournals.org/content/133/10/2881.long Clinicopathological features of acute autonomic and sensory neuropathyAlex Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted September 11, 2013 Report Share Posted September 11, 2013 one more http://www.elsevierhealth.com/media/us/samplechapters/9781560534334/Chapter_23_Acquired_Neuropathies.pdfAcquired Neuropathies Quote Link to comment Share on other sites More sharing options...
ErinM Posted April 4, 2019 Report Share Posted April 4, 2019 Zap - Can I please get the researcher's information and protocol? I have been suffering new and ever worsening neuropathy fro 9 months and it seems to respond to steroids, but my local docs are stumped. Please get in touch with me regarding this protocol. Quote Link to comment Share on other sites More sharing options...
Silence56 Posted May 10, 2020 Report Share Posted May 10, 2020 Hi, I would love to know the treatment protocol here. Please can yo u share this with me. I have SFN and its likely an inflammatory cause. Has anyone else tried steroids as suggested in the article? Quote Link to comment Share on other sites More sharing options...
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