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Old 12-18-2020, 03:34 PM #41
JKPHOTO JKPHOTO is offline
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Default Pirenzipine

East Virginia Medical School is seeking patients to trial this topical drug for neuropathy. The catch is: The study is in Norfork Virginia. They don't pay travel expenses or lodging. The study lasts 3 months. I hope that this drug can help neuropathy patients in the future. More information below.

EVMS Pulse Newsroom | Eastern Virginia Medical School | Media | Press

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Old 01-26-2021, 08:13 PM #42
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Originally Posted by JKPHOTO View Post
East Virginia Medical School is seeking patients to trial this topical drug for neuropathy. The catch is: The study is in Norfork Virginia. They don't pay travel expenses or lodging. The study lasts 3 months. I hope that this drug can help neuropathy patients in the future. More information below.



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I believe they're looking for DPN patients only?
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Old 01-26-2021, 08:20 PM #43
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Wanted to give an update. I've been on and off doing topical pirenzepine but have recently fully committed to it.

The CEO of Winsantor did a Zoom with a Facebook group about pirenzepine and neuropathy.

In it he said, the topical solution (which is a spray) contains coconut oil, DMSO, water, alcohol and pirenzepine.

So it seems they're using DMSO to transport it since pirenzepine is not soluble in alcohol.

I've been crushing 100mg of pirenzepine, mixing with it with 1cc of water and 2cc of 70% DMSO.

I'm not sure if that's enough DMSO or not. I've read that you need DMSO at 60% to transport molecules across the outer skin barrier.

WInsantor is testing 150mg and 75mg of application right now. My reading of their available literature says a 4% solution is necessary.

I have slowly progressing CIPN that seems to be inherited in my family (father and sister both have it, symptoms are a bit different but starts sometime in 4th to 5th decade of life).

As such it's hard to tell change.

I'm not a chemist and have no chemistry training. If anyone has any insight on how we can make an effective topical, please share.
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Old 01-27-2021, 10:10 PM #44
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hello,
I have been researching compounding pirenzepine into a topical cream for neuropathy and discovered this drug is not approved for compounding in the U.S. I am looking into other options i.e. Mexico and Japan for compounding pirenzepine as a 4% topical medicine.

hello,
where did you find the pirenzepine? I have found 25mg tablets in Japan.

Thanks

how did your pirenzepine work for neuropathy?

Hi. What FaceBook PN group did you see the person who had success with pirenzepine?

Hello. Like you, I am committed to finding a way to compound 4% pirenzepine cream/spray to handle my ON and at age 73, got nothing to lose I figure. Currently, trying compounding in Mexico. How has it worked for you?

thanks,

Last edited by Chemar; 01-28-2021 at 09:17 AM. Reason: merging 6 posts into 1 for clarity as did not quote posts responding to
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Old 01-29-2021, 03:06 PM #45
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Cool finding a source for medical grade pirenzepine

Does anyone know of a legal source for purchasing medical grade pirenzepine to be compounded into a topical medication? So far, I have discovered it is not available in the u.s. and I think Mexico. You can get 25 mg tablets from Japan but not sure of the quality or purity. I do not want to break a law, just that at age 73, and considering reports of safety that I have nothing to lose. thanks and best to all
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Old 04-07-2021, 06:56 PM #46
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I'm joining the party here. Recently developed suspected SFN and am very interested in these antimuscarinics. At this point, they seem like the best option for fending off progression while the very slow FDA research does its thing on the existing avenues for PN drugs.

I'm waiting on a box Pirenzepine pills from Japan, with plans to attempt compounding myself. There is a user on Reddit who seemed to have a decent formula, and mncyclist in this thread might also be onto something.

There was also an account on Reddit of someone who had success using it orally, though Winsantor has said it's inadvisable due to the dosage you'd need. I read somewhere you will only absorb 25% of the medication when taken orally.

There is also information about the use of PDE5-inhibitors (Viagra, Cialis) in the treatment of PN. Though I haven't tried this myself yet.

I'm not recommending anything in this post, just reporting on what I've read.

We're a small community– those who have PN who are willing to self-experiment (within reason) and help ourselves where our doctors cannot. So I will commit to updating this thread after trying any of these interventions.

Any new info on compounding techniques and/or results would be greatly appreciated.
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Old 04-07-2021, 10:11 PM #47
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I came across this so putting here just FYI.

THE NEUROTRANSMISSION | September 2020, Vol. 4
The Neurotransmission Update: Expanded Access, COVID-19 Disruption and Clinical Trials Updates

... mentions that apart from the Diabetic PN trial at East Virginia, they hope to begin trials by early next year in "chemo-induced peripheral neuropathy and HIV-induced peripheral neuropathy".

Expanded Access | Information for Patients | FDA
“compassionate use”, expanded access

I also found a Registration for a trial in Australia "for healthy volunteers" but nothing has happened on that since 12/04/2017 (12th of April) as far as I could find.
ANZCTR - Registration
Australian New Zealand Clinical Trials Registry.

Last edited by Lara; 04-07-2021 at 10:47 PM.
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Old 04-08-2021, 01:00 AM #48
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Originally Posted by twitchy_bar View Post
I'm joining the party here. Recently developed suspected SFN and am very interested in these antimuscarinics. At this point, they seem like the best option for fending off progression while the very slow FDA research does its thing on the existing avenues for PN drugs.

I'm waiting on a box Pirenzepine pills from Japan, with plans to attempt compounding myself. There is a user on Reddit who seemed to have a decent formula, and mncyclist in this thread might also be onto something.

There was also an account on Reddit of someone who had success using it orally, though Winsantor has said it's inadvisable due to the dosage you'd need. I read somewhere you will only absorb 25% of the medication when taken orally.

There is also information about the use of PDE5-inhibitors (Viagra, Cialis) in the treatment of PN. Though I haven't tried this myself yet.

I'm not recommending anything in this post, just reporting on what I've read.

We're a small community– those who have PN who are willing to self-experiment (within reason) and help ourselves where our doctors cannot. So I will commit to updating this thread after trying any of these interventions.

Any new info on compounding techniques and/or results would be greatly appreciated.
Hey twitchy_bar,

Welcome to the forum. Interesting approach and thoughts. However don't overlook the obvious like adding B12 and B1 and the other traditional recommended supplements. The body will find a way to heal itself. Do the simple things first if you haven't already.

However you are describing an approach I am not aware of and I encourage you to share that information and keep us updated. I am part of your "PN community" and will take great interest in your progress.

Best wishes,

Atty
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Old 04-12-2021, 05:51 PM #49
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Hey twitchy_bar,

Welcome to the forum. Interesting approach and thoughts. However don't overlook the obvious like adding B12 and B1 and the other traditional recommended supplements. The body will find a way to heal itself. Do the simple things first if you haven't already.

However you are describing an approach I am not aware of and I encourage you to share that information and keep us updated. I am part of your "PN community" and will take great interest in your progress.

Best wishes,

Atty
Hi Atty,

Thanks for your note. I'm definitely trying any and all avenues at this point, starting with supplements. So far though (1-2 months in), I'm continuing to see worsening symptoms. None of the "easy" fixes have appeared on my bloodwork, but I am still taking B1, B12, Omega 3, Nicotinamide Riboside, ALCAR, R-ALA, Turmeric, Evening Primrose Oil, Vit. D3 and E, etc.

I'll keep this thread posted with any updates on the other treatments.
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Old 04-12-2021, 07:01 PM #50
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Twitchy: If what you are trying does not work, I've had good success with Inosine and my best source is PureFormulas.
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