I haven’t yet. I had another appointment with pain mgt Dr and I asked for mexilitine again and he wouldn’t prescribe it neither did my rumatologist.
I recomend taking medical case arrivals showing mexiletine as a very effective treatment . It seems it doesn’t help the majority but the people it does get really good relief.
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Agree, well put
Stan
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Sad to hear of these experiences. Good idea to keep looking until you find a doc who you trust and will listen. I know there are rheumatologists who can and do.
Stan (GP)
Thanks, this is a good article from a number of years ago that highlights the importance of trying to establish a diagnosis of primary or secondary EM. If secondary it may well be possible that treatment of the underlying cause may significantly reduce or even eliminate the EM. If the secondary cause is autoimmune that may respond to oral steroids or immune therapies. It may well also explain why if it’s primary EM that it’s unlikely to respond to steroids.
In addition it’s been said before how challenging it is to get to the bottom of and how there are many conditions/ pathways that end up presenting as EM. Since there’s no “one size fits all”, it bears out that currently no one therapy suits all. At least for now; it remains to be seen whether there is a shared end point in the pathway that a new medication or non medication can be beneficial.
So to summarise, find a doctor you can get along with to establish what sort of EM you have. Then look at trialling the various treatment options to find one or more that helps and is tolerated.
Aren’t we “lucky” ha ha.
Breathe ~ soften ~ allow
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Hi Stan,
Thanks for your comment. It’s so interesting to hear from a GP on here + appreciate your perspective!
Yeah, in that case study they had reason to suspect autoimmune origins but I think even if there is no evidence to suggest so, that “idiopathic” EM/SFN might still be autoimmune or dysimmune in origin (I’m not saying I agree, just communicating what my neurologist told me at my last appt). Esp. if onset is young or if there was illness / virus at onset. Perhaps the paper I linked wasn’t the best one out there to communicate that 
From looking at this forum and others, I get the feeling that most “idiopathic” people do not benefit from IVIG / steroids, but there still might be a sliver who will get benefit.
I will copy/paste a portion of his medical notes just in case this is helpful for anyone:
"
I talked about treating her symptoms as idiopathic painful small-fiber neuropathy with steroid or IVIG.
- She has tried many available symptomatic treatments
- Especially when risk factors of sensory small-fiber or ganglionopathy are lacking (particuarly in pediatric or adolescent patients) are lacking/absent, “dysimmune” process is often suspected.
- Immunotherapy with steroid and IVIG (intravenous immunoglobulin) has been recommended as expert opinion with careful reviews on available data and literature.
- I explained to Ms. * evidence level of immunotherapy for small-fiber neuropathy
- We need more evidence for small-fiber/autonomic neuropathy. We will do skin biopsy today
- With positive findings, we will try steroid or IVIG
- REFERENCE: Neurotherapeutics (2016) 12:108-117. J Peripheral Nervous system (2006) 11:47-52
- Active clinical trial of IVIG in EU: NCT02637700
"
(All my bloodwork is normal.) It seems my insurance won’t approve IVIG due to $$ and lack of good clinical trials, but again just in case this helps someone or triggers an idea for anyone. (And, I don’t know about EM without SFN.)
Perhaps this link/quote might have been better to relay what I was trying to relay
“In additional to the above systemic autoimmune causes of SFN, there is emerging evidence that some cases of SFPN of unknown cause (“idiopathic SFPN”) are caused by acute or chronic tissue-specific dysimmunity, akin to the tissue-specific dysimmune large-fiber neuropathies Guillain-Barré syndrome and chronic inflammatory neuropathy. Several authors have documented steroid-responsive cases of idiopathic SFPN [89, 90]. My patient, depicted in Fig. 5, had no history of autoimmunity or serological markers but his severe refractory neuropathic limb pain, swelling and redness responded within hours to intravenous methylprednisolone, his symptoms resolved within a year and no longer required treatment, and he remained without treatment or recurrence for more than a decade, consistent with an acute monophasic autoimmune form of SFPN”
from https://www.ncbi.nlm.nih.gov/pubmed/26526686. Another member @rayofhope linked an awesome lecture somewhere on here by the author (Oaklander).
(It’s hard for my OCD not to get obsessive about all this )
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Here is Dr. Oaklander’s link
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excellent presentation by Dr Oaklander! My limited understanding is that EM is the end point/ manifestation of many different causative pathways with a multitude of secondary causes, as well as primary inherited or non inherited. All leading to a dysfunction of the complex interaction between neural and vascular systems. As Dr O explained many of these understandings about SFPN & related EM don’t yet exist in published literature and they are writing the future texts that will in time become tomorrow’s dogma.
Although for us progress seems slow, at least we are living in times where there have never been better understandings and it continues to evolve. Since the end point shares the very similar symptoms and signs of EM I expect that in time medical science will have a good understanding of the pathophysiology which will likely lead to effective therapies. Although EM has been known about for years it appears its becoming more recognised and resources will hopefully flow into further research. It’s way more common than the historically quoted stats have us believe. The autoimmunity or “dys-munity” factors in play provide potential target for new therapies, beyond IVIG.
People may be aware of exciting breakthroughs in therapies for metastatic melanoma, mesothelioma, Crohns disease and EGPA amongst many others.
Dear Will,
I’m sorry],I just read your last June post. So it’s been 3 months. I hope you found hope in your new meds. I’ve found, in my hot bod(haha) that with a new Med, I have to be patient. It can take 6 wks to 3 mos for me to realize a difference. I hope you’ve had pain reduction. P
Prednisone has done wonders for me and hypothesis. I’ve been as high as 200 mg a day. However the side effects of the prednisone has been one that I can handle. Including Mercer infections And abscess. I’ve run out of things to try.