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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Debbie | @dbeshears1 | Dec 17, 2022

In reply to @jake1234 "W hat is the best way to treat real cold feet and legs?" + (show)

When my PN started 6 years ago, heat and cold intolerance happened many times a day, for long periods, with the frozen-to-the-bone feeling in the feet & hands the most frequent and hopelessly painful. I found that in time, Gabapentin helped keep these in very much improved moderation that provides so much relief in comparison to back then. I had a 6 month follow-up with my Neurologist yesterday and ask for advice on how I might handle flare-ups of painful icy cold when it happened, and he said, "I really don't know, maybe heating pads?" Sadly, 6 of the 8 other questions I had written down to ask him, ranging from "Prognosis/Average Expectations for my Condition" to "advice on trying Alpha Lipoic Acid when you have a low blood sugar problem" to "Have I ever been or should be tested for CMT" were answered briefly and simply with just "I don't know". But with this forum, you can learn a lot of tried remedies from experienced folks and can hopefully find something that works for you!

lupusgirl | @lupusgirl | Jan 4, 2023

In reply to @windsorchris "hello, would you please contact me as my objective is to get started on the topical..." + (show)

Chris were you able to get FDA clearance to obtain Pirenzepine?

danpinc2022 | @danpinc2022 | Jan 5, 2023

In reply to @dbeshears1 "When my PN started 6 years ago, heat and cold intolerance happened many times a day,..." + (show)

The only help is lots of PT. I have been in a wheal chair for 17 months now, I have been to in patient and home health care now. If you can get where you can stand even with help you can make progress, you have to get vertical ! You can learn to walk with a walker. Let's face you will never play tennis again. It's a new life style you have to learn to live with, Dan

Debbie | @dbeshears1 | Jan 5, 2023

In reply to @danpinc2022 "The only help is lots of PT. I have been in a wheal chair for 17..." + (show)

I live by PT - I have a very smart therapist who helps keep my legs, arms, and abs strong! Teaches performing life skills without injuring myself. I'm praying you're out of your wheelchair soon. It took me 6 months, but I can even drive now! I was never much of a tennis player, but I know I'll never run another marathon, or even 5 steps, but I can walk a bit. I've even danced, and still have no rhythm just like before neurpathy, but now I have an excuse LOL. Yes - PT is key!

olya | @olya | Jan 6, 2023

Yes. There is study for topical pirenzapene for chemo induced neuropathy. It is funded by Winsantor.

lupusgirl | @lupusgirl | Jan 8, 2023

In reply to @lupusgirl "Chris were you able to get FDA clearance to obtain Pirenzepine?" + (show)

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.

windsorchris | @windsorchris | Jan 9, 2023

In reply to @lupusgirl "Chris were you able to get FDA clearance to obtain Pirenzepine?" + (show)

lupusgirl | @lupusgirl | Jan 30, 2023

In reply to @jimhd "@happydaysareahead Do you know what the dosage is? Jim" + (show)

Some took 25 mg orally and some took 50 mg on Reddit forum. I'm on 25 mg but I have only been on it for 4 days so far. I also apply the topical solution that I made by grinding it up with a spoon (147 mg) in a bowl and add a little DMSO gel (70%) then apply it to my feet and calves. I actually have neuropathy up to my glutes. It's mostly on the backs of my legs but I have some on the fron of my knees and in the bend of the tops of my legs. I purchased it in Japan. I'm sure it will take a while to see results. Nerves only grow 1 mm a day. I have motor skill issues and weakness because I have large fiber damage as well as small fiber. Mine is auto-immune.

jeffrapp | @jeffrapp | Feb 2, 2023

In reply to @lupusgirl "Some took 25 mg orally and some took 50 mg on Reddit forum. I'm on 25..." + (show)

Hi lupusgirl
You say that you apply a topical solution using 147 mg. Can you please explain in more detail why and how you can up with that dosage?
Thanks

lupusgirl | @lupusgirl | Feb 5, 2023

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

Winsantor's website states currently they aren't accomodating expanded access to the pirenzepine compound. Probably because they have to have enough supply for the next trial in 2023 which is HIV and chemo induced neuropathy. I would check their site occasionally. It may change.