Anyone Heard of Pirenzepine for Small Fiber Neuropathy?

That would be one of my concerns also since I've had idiopathic small fiber peripheral neuropathy for 20+ years.

Really great points. One of the things Mr Kim mentioned to me was while the focus is on DPN and CPN the science appears to show the mitochondrial make up of most neuropathies appear to be similar. Now the only concern I have is outside elements that caused the neuropathy in the first place will they allow recovery. For example if you have autoimmune which is what it appears I have isn’t addressed will it allow for recovery or will it continue to attack? Just something to consider one thing that is of interest to me would be for them to look at a pill solution to become system wide and not so specific to skin soluble; potentially addressing autonomic nerves etc. At the end of the day it appears someone is making great inroads to something no one else has been able to in the past.

I wish they would hurry up so we could try it!

Me to because I play the guitar and love writing songs but now my fingers are going very numb. I pray all this is true.

Just to say that pirenzepine (PZ) in pill form already exists. I’m in the U.K. and here it is used for hypersalivation (drooling) caused by other medications. Apparently it used to be used for stomach ulcers. It would be worth looking to see if it is available in the US. The scientists at WinSanTor, specifically Paul Fernyhough is conducting preclinical studies to see if PZ induces outgrowth in autonomic nerves.

Hi, @clarkie - welcome to Mayo Clinic Connect. Thanks for sharing this information on pirenzepine.

Do you also have small fiber neuropathy?

Yes I do, I have celiac disease and bilateral facial neuropathy

Hi, @clarkie - you may be interested in checking out these discussions on celiac disease:

On potential celiac https://connect.mayoclinic.org/discussion/gluten-free-diet-and-possible-celiac-disease

On celiac recovery and diet https://connect.mayoclinic.org/discussion/best-diet-for-recovery-aside-from-being-gluten-free

On refractory celiac https://connect.mayoclinic.org/discussion/celiac-disease-under-immune-disorders-refractory-type

I'd also like to invite a few members who have mentioned facial neuropathy or similar to join this conversation and offer support and any tips they have for managing it, like @sallymagint @rwinney @artscaping @bethb94.

What have you experienced with your facial neuropathy, clarkie? Are you having more pain, burning, numbness, something else?

Winsantor, the company trialing pirenzepine, is in phase two trials right now for DPN. Phase one was safety, phase two is efficacy. Phase two is scheduled to be done in December 2019.

They did a reddit AMA (ask me anything) in May that's useful to read: https://twitter.com/WinSanTor/status/1125539822313934848?s=20

Interestingly, they could find no big pharma company interested in funding them. So they crowd funded and got government funding.

They have a patent which describes what they've found. Pirenzipene reversed PN in mice whether given orally, topically or by injection. They sound quite excited if you read the patent. https://patents.google.com/patent/CA2804797C/en

The great thing is that pirenzepine has an excellent safety profile having been used in Europe and elsewhere for years. Side effects seem very small and the drug is unable to cross the blood/brain barrier.

I've also found cases of people self trialing this on themselves (the drug can be found for sale overseas through google searching). Someone posted that they had reversed their systems in the Neuropathy group on reddit. (https://www.reddit.com/r/smallfiberneuropathy/comments/attfxc/i_reversed_most_of_my_sfn/)

@happydaysareahead

Do you know what the dosage is?

Jim