My mom has SFSN and my brother has CIDP. From what I've seen IV IG is the only treatment for this kind of condition currently available and, even then, it's not a permanent fix. My brother has had it several times and it saved his life but the side effects are horrible. There are some interesting advancements happening in the States using stem cell but it's still very early days and even more expensive than IV IG. Just due to the process involved it's hard to see it coming down in price all that much.

This result is particularly exciting since it sounds like it's a drug and not a bio-product like IV IG or stem cell therapy.

Also, sorry to hear about your SFSN. Hope you're doing ok.

I'm in the UK, and new treatments on the NHS happen very, very slowly. If they're as expensive as IVIG, if they happen at all, it will be a postcode lottery, and only available for 1 or 2 specific conditions, with several constraints. I very much doubt it will ever be a possibility for me.

I have chronic idiopathic axonal polyneuropathy (and several other chronic conditions) that have left me in near-constant pain (and at times with mobility issues, particularly the first year). It was initially thought to be possibly autoimmune in nature (I have two family members with 1 or more autoimmune diseases), but it was never confirmed.

I've been told that IvIG isn't even a good option for me, and in any case, I'm concerned about the at times severe side effects.

There are so many people around the world suffering from various forms of neuropathy, yet it seems to get relatively little attention. Some people are in wheelchairs, some in constant and severe pain, others lose control of their bladder or bowels, and some experience all of the above. Many millions of people worldwide. It seems like there would be a greater effort to come up with new therapeutics. At the very least, it's a huge market.

> except for maybe IVIG treatments (there have been some papers showing promising results, but it's a very expensive treatment, and the NHS will not pay for it).

I know this may sound hard to believe, but in some cases it's possible to get insurance to cover IVIG for aaSFPN in the United States, even though it's not yet FDA approved for that condition: https://www.karger.com/Article/Fulltext/498858#scrollNav-3-6

Otherwise, IVIG for SFPN is quite expensive just about anywhere.

I will try to get back to this thread with some resources but I would recommend as you are in the UK to look into clemastine/tavegil which you can get without prescription (noted in the article as about to be trialled with metformin) due to its action on P2X7 receptors/Schwann cells.

The ReBUILD doses were rather high though (10 tabs a day!). 1 tab would probably do it over a few months.

That's interesting. Just take care with that. There's some epidemiological evidence that anticholenergics like clemastine may possibly contribute to dementia:

https://www.health.harvard.edu/blog/common-anticholinergic-d...

The data suggest correlation, not necessarily causation, but at the least I'd carefully investigate the risks before taking any anticholergic in such high doses. I do understand (with my own chronic health issues) that even with the risk of dementia later on, it may still be a possibility, depending on the severity of current symptoms.

> look into clemastine/tavegil

Thanks, I've never even heard of clemastine, and it's rare to find anything notable that doesn't require a prescription in the UK! I already take another gen 1 antihistamine at night (they are very sedating for me), so I guess could swap it for clemastine.

Now all I need to do is convince someone to give me a prescription for metformin...

I know how to use Google Scholar etc; I was hoping for specific suggestions.

This isn't typically used even with the option of off label prescription.