1. < Neuropathy

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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

jordanabrams30 | @jordanabrams30 | Oct 3, 2020
In reply to @happydaysareahead "Winsantor's site has an explanation of how it works. Pretty interesting stuff. Two other drugs also..." + (show)
@happydaysareahead

Winsantor's site has an explanation of how it works. Pretty interesting stuff. Two other drugs also in phase 2 trials that do a similar thing.

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Not sure if you saw but Winsantor sent out an email last week I believe that you now can apply for their treatment under the compassion of care act. Requires work by you and your doctor and won’t be covered by insurance but now have an option.

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helennicola | @helennicola | Oct 7, 2020

Winsantor has Phase I scheduled for April in Canada, Phase II by end of year. Their drug Pirenzipene is sold in other countries for treating stomach ulcers. I just read the pub. release on Facebook. Interesting that a drug which addresses gastro issues could successfully reverse or help neuropathy. Fingers crossed. Helen

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1 reply
sunnyflower | @sunnyflower | Oct 9, 2020
In reply to @helennicola "Winsantor has Phase I scheduled for April in Canada, Phase II by end of year. Their..." + (show)
@helennicola

Winsantor has Phase I scheduled for April in Canada, Phase II by end of year. Their drug Pirenzipene is sold in other countries for treating stomach ulcers. I just read the pub. release on Facebook. Interesting that a drug which addresses gastro issues could successfully reverse or help neuropathy. Fingers crossed. Helen

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Thank you and please keep us posted! Sunnyflower

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windsorchris | @windsorchris | Jan 20, 2021
In reply to @happydaysareahead "Winsantor and the FDA are making their topical Pirenzepine cream available for early access. You’ll need..." + (show)
@happydaysareahead

Winsantor and the FDA are making their topical Pirenzepine cream available for early access. You’ll need to work with your physician to get it, but the FDA approves 99% of these requests.
https://mailchi.mp/winsantor.com/the-neurotransmission-update-expanded-access-covid-19-disruption-and-clinical-trials-updates?e=98a8a0ab42

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hello, would you please contact me as my objective is to get started on the topical pirenzepine therapy with a fda waiver and dr guidance. I am a 5 year pn patient age 73 with little to lose and much to gain as far as quality of life. thanks, Chris

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 21, 2021
In reply to @windsorchris "hello, would you please contact me as my objective is to get started on the topical..." + (show)
@windsorchris

hello, would you please contact me as my objective is to get started on the topical pirenzepine therapy with a fda waiver and dr guidance. I am a 5 year pn patient age 73 with little to lose and much to gain as far as quality of life. thanks, Chris

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Hi @windsorchris, welcome to Mayo Clinic Connect. You will notice that I removed your email address and phone number from your post to protect your privacy and prevent spammers from getting your personal contact information. We encourage members who want to exchange personal contact information like email addresses and phone numbers to use the private message function of Connect.

I should also point out that by asking questions on the forum and sharing experiences, you benefit from the knowledge of many.

Chris, when will you start topical pirenzepine therapy?

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pfbacon | @pfbacon | Jan 21, 2021

Yes, please do let us know how it goes with the Pirenzepine therapy. I will ask my pain specialist about it. I'm willing to try most anything except narcotics, stuff I know won't work (like 'remedies' that are nothing more than a smattering of vitamins/minerals that we get in our food already), and religion. Peggy

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windsorchris | @windsorchris | Feb 11, 2021

Hello, have read several people have managed to acquire pirenzepine and compounded into a topical solution. Are there any reports of results?

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Amanda Roe | @amandajro | Feb 11, 2021

Hello @windsorchris. I can see that you are interested in connecting with members who have experience with Pirenzepine so I have moved your post into an existing discussion on this topic. I can see you've posted here before back in January when you noted you were planning to start pirenzepine therapy.

Have you started and are now looking for some additional feedback?

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1 reply
magnum52 | @magnum52 | Feb 11, 2021
In reply to @lisalucier "Hi, @cwallen9 - thanks for pointing out that this drug is being studied for use with..." + (show)
@lisalucier

Hi, @cwallen9 - thanks for pointing out that this drug is being studied for use with small fiber neuropathy. Perhaps other members who've talked about this condition may be familiar, like @elsa @rgolia13 @clairecas @fbell330 @djroberts, and have further information or thoughts to share?

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It’s been study by a small company for years. Not available in the US, but is in Japan. I believe the company looking at it here is WinSanTor. They seem to be going nowhere with it anytime soon.

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windsorchris | @windsorchris | Feb 18, 2021
In reply to @amandajro "Hello @windsorchris. I can see that you are interested in connecting with members who have experience..." + (show)
@amandajro

Hello @windsorchris. I can see that you are interested in connecting with members who have experience with Pirenzepine so I have moved your post into an existing discussion on this topic. I can see you've posted here before back in January when you noted you were planning to start pirenzepine therapy.

Have you started and are now looking for some additional feedback?

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Not yet, but doing research on just where I can purchase and eager to talk to others who have found and applied pirenzepine.

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