Anyone Heard of Pirenzepine for Small Fiber Neuropathy?

Posted by cwallen9 @cwallen9, Jan 28, 2019

I just read articles about a drug called Pirenzepine that is being studied to help heal nerve damage. It is being touted as a cure for small fiber neuropathy. I think it is still in the study phase, but is used for other things such as stomach ulcers.

@clarkie

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.

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

Do you also have small fiber neuropathy?

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@lisalucier

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

Do you also have small fiber neuropathy?

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

Liked by Lisa Lucier

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@clarkie

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

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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?

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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/)

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@happydaysareahead

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/)

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@happydaysareahead

Do you know what the dosage is?

Jim

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For humans (from the google patent doc), pirenzepine is typically dosed up to no more than 300mg a day.

In the rat studies, they were giving 10mg/kg orally which seems like a lot for a human to ingest. The person in the reddit link I posted was using only 25mg a day.

In their phase 2 studies, they're testing different topical preparations. In the study I read, it's up to 75mg applied topically.

An interesting part of all of this is that it was discovered accidentally. There are several drugs in this class and at least a few regrow peripheral nerves. Oxybutin is used to control overactive bladder and is given transdermally. A physician reported that one of his patients had reversed her neuropathy symptoms after being on it. (https://search.proquest.com/openview/981503a69793ba0ca6338bc10bfa98c6/1?pq-origsite=gscholar&cbl=1896353)

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Is there a way to self trial 4% pirenzepine applied topically? Could i buy it from the japan manufacter in fill form and make a cream?

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@bruceleelives

Is there a way to self trial 4% pirenzepine applied topically? Could i buy it from the japan manufacter in fill form and make a cream?

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Sure. The cream isn't sold but you can make the pills into a topical med.

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