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Old 04-08-2021, 01:00 AM #1
Atticus Atticus is offline
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Quote:
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 #2
twitchy_bar twitchy_bar is offline
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Originally Posted by Atticus View Post
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 #3
caroline2 caroline2 is offline
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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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Old 04-12-2021, 09:02 PM #4
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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.
Hi Caroline, thank you! I have not heard about Inosine before, but I will definitely look into it. How long did you take it, and in what dose, before seeing an effect?

Also I noticed your signature and the mention of Grape Seed Extract. I’ve heard of that, but didn’t know it had neurological benefits. Would you mind expounding on your experience with that one too?

Thanks in advance. Learning about what has worked for others definitely provides some degree of hope.
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Old 05-10-2021, 04:35 PM #5
chriswindsor chriswindsor is offline
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Default What happened? Those who compounded pirenzepine

Strongly interested in pirenzepine topical including acquiring and compounding. Noted several folks who are doing this but no follow-up reports. anyone out there who has been making topical solution and using pirenzepine to treat PN. Thanks, Chris
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Old 07-31-2021, 02:30 PM #6
Fbell330 Fbell330 is offline
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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.
Hello I have been reading post on here for several years and noticed your. I to had good blood work but continued to take supplements and my symptoms got worse. Finally a neurologist suggested that my B1 or B6 may be to high and causing my nerves to be agitated. I stopped over doing the supplements and things are mulch calmer. Also try reducing your gluten intake.
A word of encouragement. You may not want to live with neuropathy but you can . Shoes, socks, supplements, diet, and exercise all play a roll in managing my neuropathy and it took a while for me to get the combination down . I still have neuropathy and a it occupies alot of energy but I am able to enjoy life. Good Luck
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"Thanks for this!" says:
Atticus (07-31-2021)
Old 10-27-2021, 02:12 AM #7
jurgen975 jurgen975 is offline
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Hi any updates for the people who went on making there own perenpezine cream
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Old 11-02-2021, 02:41 AM #8
jurgen975 jurgen975 is offline
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This looks promising
Can anyone give me a update about if you made this cream yourself how it is effecting your neuropathy

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