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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@jeffrapp

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

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Cinicaltrials.gov has it listed on their pirenzepine trials as 146 mg. I just pulled it up again. I ordered the pills from Bio-japan.net. I just mix up 150 mg with a little water and 70 % DMSO. The pills are 25 mg. I crush the pills with a mortar & pestle. I don't think the mg's have to be exact. It's 4ml. I've been applying it to my feet and calves for a little over a week. I'm sure it takes a while to reverse PN.

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@roger50

Please tell me your procedure for actually making the cream....ingredients etc

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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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@lupusgirl

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.

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HI TO EVERYONE...
HOW do you if you have small or large fiber damage? And PT for neuropathy?requires some special??? Thanks for reading

Marsha IN COLORADO

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@pittcrew2020

HI TO EVERYONE...
HOW do you if you have small or large fiber damage? And PT for neuropathy?requires some special??? Thanks for reading

Marsha IN COLORADO

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Large fiber is axonal damage which controls muscles (weakness) . Also coordination and balance.
Small fiber is usually limited to numbness and pain. Although it’s possible it can affect your balance.
Your neurologist will be able to confirm how extensive the damage is.

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@pittcrew2020

HI TO EVERYONE...
HOW do you if you have small or large fiber damage? And PT for neuropathy?requires some special??? Thanks for reading

Marsha IN COLORADO

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Hi @pittcrew2020.
The best way is to be tested, ideally by a neurologist. Traditionally, this is done by a skin biopsy, but there are other, newer techniques.

FWIW, some people get both small and large fiber involvement.
Best.

There are limited treatment options for most cases of neuropathy, but some kinds are treatable, at least to the extent of slowing or stopping the progression. It’s best to learn all you can about yours.

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@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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No one can get topical pirenzepine yet. Winsantor has stated this on their website. They have to have enough of the compound to use in their clinical trials. I'm thinking that's the reason.
They are a small biotech company. I ordered it from Japan, as did other people on Reddit. I'm taking it orally now. I was doing topical but I've seen people that have good results doing it orally. I haven't been on it long enough to notice change-only a month.

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@lupusgirl

No one can get topical pirenzepine yet. Winsantor has stated this on their website. They have to have enough of the compound to use in their clinical trials. I'm thinking that's the reason.
They are a small biotech company. I ordered it from Japan, as did other people on Reddit. I'm taking it orally now. I was doing topical but I've seen people that have good results doing it orally. I haven't been on it long enough to notice change-only a month.

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We all hope that the topical Winsantor is developing is more effective than the oral prenzepine. We have been waiting for this since 2019.

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@nukhan

We all hope that the topical Winsantor is developing is more effective than the oral prenzepine. We have been waiting for this since 2019.

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According to people taking the oral route it works. I'm on it right now. I'm not waiting another couple of years on the topical to be approved by the FDA. Those people taking it or have taken it are on Reddit under Small Fiber Neuropathy.

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@lupusgirl

According to people taking the oral route it works. I'm on it right now. I'm not waiting another couple of years on the topical to be approved by the FDA. Those people taking it or have taken it are on Reddit under Small Fiber Neuropathy.

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I know that group on Reddit very well. Please keep us up to date on your progress in either location (Connect or Reddit). I have had to order drugs from Japan before (ketotifen) so understand the process.

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@aaroncush

I know that group on Reddit very well. Please keep us up to date on your progress in either location (Connect or Reddit). I have had to order drugs from Japan before (ketotifen) so understand the process.

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I will!

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