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.

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@lupusgirl

Winsantor states on their website that they are not offering access to pirenzepine outside of clinical trials unfortunately. It states that if that status changes they will post it.

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@lupusgirl

I crush up 150 mg which is about 4%. Mix it with 70% DMSO gel, which is available on Amazon. You don't need a lot of the gel. Just two squirts.Add a couple of drops of water. It dries like water and is not greasy at all.
I've been using the foot and calf application plus I take 25 mg a day. It's been about a week and a half since I started it. Haven't noticed anything yet but wouldn't expect to because nerve damage only reverses 1 mm a day. If I notice anything I promise I will report back.

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Hi,
I just ordered the capsules to try and make a topical. Did this work for you as a topical? I'm a little nervous to take it orally but I'm very interested to know how this worked for you now that time has gone by. Thanks so much!

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@donniemontgomery

Hi,
I just ordered the capsules to try and make a topical. Did this work for you as a topical? I'm a little nervous to take it orally but I'm very interested to know how this worked for you now that time has gone by. Thanks so much!

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Hi, sorry I don't have an answer for you. I was wondering though if you could tell me where you ordered the capsules from? My symptoms are severe and I would love to see if this helps but I can't find a source to get it.

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I believe Phase 1 and 2 clinical trials included only participants with diabetic neuropathy. Phase 3 is expected to start shortly with a much larger group of participants. I was under the impression that the oral pirenzepine can cause stomach issues, ironically.

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@maggie7816

I believe Phase 1 and 2 clinical trials included only participants with diabetic neuropathy. Phase 3 is expected to start shortly with a much larger group of participants. I was under the impression that the oral pirenzepine can cause stomach issues, ironically.

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Welcome @maggie7816, I think there is a lot of hope in the neuropathy community for the success of the WinSantor clinical trials on pirenzepine. I'm one of the fortunate folks with only numbness with my neuropathy but I also wish there was a magic bullet. Have you tried any other treatments for neuropathy?

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Growing back nerves to increase sensation and hopefully decrease pain would be a game changer for so many people.

On my best days feet have “dead zones” on the soles where the nerves are gone, which is annoying and makes me somewhat unstable. But when my SFN flares up my whole body can be in pain or I have numbness from feet to face. Hoping researchers find that magic bullet to help most people without awful side affects. Fingers crossed. 🤞🤞

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In reply to @johnbishop. Over the 12 plus years that I have suffered with neuropathy in my feet and legs, I have been on Gabapentin 2700 mg per day (no longer taking it) and Cymbalta. I’ve had physical therapy a nd acupuncture, intravenous steroid injections in my arm and also in my spine. Finally, I tried Calmare therapy. None of these treatments have worked. I’m putting a lot of faith in WinSanTor. I’m not young anymore, just young at heart, so I could use help sooner rather than later

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For anyone who has purchased Pirenzepine pills from biojapan and making their own compound, are you planning on using it for 6 months? It sounds like the clinical trial lasted that long. Did you buy the pills for the entire period? What quantity of pills did you need for the whole time? I assume that 150 mg is needed per application.

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@jackevenablo1

Hi, sorry I don't have an answer for you. I was wondering though if you could tell me where you ordered the capsules from? My symptoms are severe and I would love to see if this helps but I can't find a source to get it.

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The capsules came from Japan but they stopped supplying it two months ago. You can get the actual raw powder from biotech vendors on Made in China. Some are ridiculous in price though. The vendors will give you a quote and then just wait until you get one that you can afford. Also DO NOT USE DMSO as a topical. It interrupts C conduction in the nerve. Go to Reddit and follow the SFN thread. Set up your own account with Reddit and then you can find out how to make a topical to add to your pirenzepine.

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