4 ms·

> Metformin seems to work by rejuvenating stem cells in the central nervous system, which then go on to become myelin-producing cells called oligodendrocytes. T

> Metformin seems to work by rejuvenating stem cells in the central nervous system, which then go on to become myelin-producing cells called oligodendrocytes. These churn out fresh myelin to replace that destroyed by MS I have small fibre neuropathy, which has left me with constant pain. There are basically no treatments available beyond pain control, 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). This is the first I've heard about metformin rejuvenating stem cells - if anyone knows more, especially in relation to nerve damage, or has some starting points for further research, I've be grateful.

revel 6y ago
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.
- GordonS 6y ago
  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.
PragmaticPulp 6y ago
> 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 https://www.karger.com/Article/Fulltext/498858#scrollNav-3-6 Otherwise, IVIG for SFPN is quite expensive just about anywhere.
memossy 6y ago
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.
- medical_alt 6y ago
  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-drugs-like-benadryl-linked-increased-dementia-risk-201501287667 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.
- GordonS 6y ago
  > 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...
gardenfelder 6y ago
https://pubmed.ncbi.nlm.nih.gov/?term=metformin+AND+stem+cells&filter=simsearch2.ffrft https://pubmed.ncbi.nlm.nih.gov/?term=metformin+AND+stem+cel...
- GordonS 6y ago
  I know how to use Google Scholar etc; I was hoping for specific suggestions.
medical_alt 6y ago
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.
Munky-Necan 6y ago
This isn't typically used even with the option of off label prescription.

revel 6y ago

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.

GordonS 6y ago
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.

PragmaticPulp 6y ago

> 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 https://www.karger.com/Article/Fulltext/498858#scrollNav-3-6 Otherwise, IVIG for SFPN is quite expensive just about anywhere.

memossy 6y ago

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.

medical_alt 6y ago
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-drugs-like-benadryl-linked-increased-dementia-risk-201501287667 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.
GordonS 6y ago
> 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...

gardenfelder 6y ago

https://pubmed.ncbi.nlm.nih.gov/?term=metformin+AND+stem+cells&filter=simsearch2.ffrft https://pubmed.ncbi.nlm.nih.gov/?term=metformin+AND+stem+cel...

GordonS 6y ago
I know how to use Google Scholar etc; I was hoping for specific suggestions.

medical_alt 6y ago

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.

Munky-Necan 6y ago

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