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.
I'm new to this neuropathy blogsite. Did you ever find a source for pirenzepine in Japan and have you been able to order and use
the drug for your neuropathy and did it help? Please reply.
pmogen
@bruceleelives, have you looked at the website Neurotalk.org? There is an interesting discussion regarding perenzipene also oxybutynin which had proved helpful for neuropathy pain. Helen
I'm new to this neuropathy blogsite. Did you ever find a source for pirenzepine in Japan and have you been able to order and use
the drug for your neuropathy and did it help? Please reply.
pmogen
Hi @bruceleelives, I assume you are familiar with the company Winsantor and their current phase 2 trial for WST-057 (and perhaps phase 3 by now)? I have read that it is legal to buy pirenzepine in Japan but have not heard of anyone here on Connect trying that. If you manage to get any and try to use it I would definitely be interested to know your results. Best and good luck, Hank
I'm new to this neuropathy blogsite. Did you ever find a source for pirenzepine in Japan and have you been able to order and use
the drug for your neuropathy and did it help? Please reply.
pmogen
Hello pmogen and a big welcome to the group! I haven't heard of pirenzepine but am interested to know how it works for you if you are able to get ahold of it. I use 4% Lidocaine solution (might be over the counter) on my knees where for some reason, I feel the most burn. I apply it with a Q-Tip. I use 5% Lidocaine patches for my back which are prescribed snd very expensive!. These two are the best I have used. I wish you all the best. Warm regards, Sunnyflower
I'm new to this neuropathy blogsite. Did you ever find a source for pirenzepine in Japan and have you been able to order and use
the drug for your neuropathy and did it help? Please reply.
pmogen
Interesting … a medicine that reverses the dying process of a human organ like the nervous system could have many more applications … I will ask my Neurologist/Pain Specialist about Pirenzipine. Peggy
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.
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
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
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
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
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?
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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@bruceleelives, have you looked at the website Neurotalk.org? There is an interesting discussion regarding perenzipene also oxybutynin which had proved helpful for neuropathy pain. Helen
Hi @bruceleelives, I assume you are familiar with the company Winsantor and their current phase 2 trial for WST-057 (and perhaps phase 3 by now)? I have read that it is legal to buy pirenzepine in Japan but have not heard of anyone here on Connect trying that. If you manage to get any and try to use it I would definitely be interested to know your results. Best and good luck, Hank
Hello pmogen and a big welcome to the group! I haven't heard of pirenzepine but am interested to know how it works for you if you are able to get ahold of it. I use 4% Lidocaine solution (might be over the counter) on my knees where for some reason, I feel the most burn. I apply it with a Q-Tip. I use 5% Lidocaine patches for my back which are prescribed snd very expensive!. These two are the best I have used. I wish you all the best. Warm regards, Sunnyflower
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
Interesting … a medicine that reverses the dying process of a human organ like the nervous system could have many more applications … I will ask my Neurologist/Pain Specialist about Pirenzipine. Peggy
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.
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.
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
Thank you and please keep us posted! Sunnyflower
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
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?
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