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Old 09-11-2019, 05:01 AM #1
Happytobehere Happytobehere is offline
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Sorry this site won't let me post actual links yet but you can get the ideal of which site it is from this. ** and received Pirenzepine but still made my feet swell. So I guess I'm screwed with getting the use from this. unless the gel might work a little different.

Last edited by Chemar; 09-11-2019 at 10:14 AM. Reason: ** NeuroTalk Guidelines on New Member Linking/Website redirects. Please wait till you have linking status.
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Old 10-31-2019, 08:38 PM #2
mncyclist mncyclist is offline
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I guess there are many of us interested in this. Just diagnosed with SFPN (small fiber peripheral neuropathy). Some toe, balls of feet numbness, slight burning and the shock thing.

I've ordered the 25mg pirenzepine tablets from an overseas pharmacy and will be trialing this shortly myself.

I'll keep you posted.

Note that a person on reddit did this too and good results. 25mg a day, slight stomach discomfort.
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Old 11-01-2019, 08:16 PM #3
mncyclist mncyclist is offline
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Quote:
Originally Posted by Happytobehere View Post
Sorry this site won't let me post actual links yet but you can get the ideal of which site it is from this. ** and received Pirenzepine but still made my feet swell. So I guess I'm screwed with getting the use from this. unless the gel might work a little different.
Any thoughts on making your own topical med from your pirenzepine?

If you search reddit for pirenzepine you'll read another story of an SFN sufferer who reversed many of their symptoms.
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Old 11-24-2019, 08:14 PM #4
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Any thoughts on making your own topical med from your pirenzepine?

If you search reddit for pirenzepine you'll read another story of an SFN sufferer who reversed many of their symptoms.
Just posting an update. I've been on 100mg pirenzepine for about three weeks now. I'm not having any stomach issues and am tolerating it quite well.

Will report back again on neuropathy results.
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Old 12-29-2019, 03:10 PM #5
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Quote:
Originally Posted by mncyclist View Post
Just posting an update. I've been on 100mg pirenzepine for about three weeks now. I'm not having any stomach issues and am tolerating it quite well.

Will report back again on neuropathy results.
Is there any update on pirenzepine? Where did you get it?
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Old 04-02-2020, 09:51 AM #6
dcd2103 dcd2103 is offline
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Hi guys,

New to this forum. Have suffered with SFN for several years now. Just got some pirenzipine from a japanese pharmacy, arrived yesterday.

Wanted to revive this thread. Was curious if there were any updates on those who are trying pirenzipine or Oxytrol?
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Old 04-02-2020, 02:06 PM #7
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Hi dcd2103

Welcome to NeuroTalk .

I hope that other members will be able to share their experiences of pirenzepine with you.

You can also use the Search option (https://www.neurotalk.org/search.php) to find other threads here where it has been discussed.

Best wishes.
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Old 04-06-2020, 10:19 PM #8
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Quote:
Originally Posted by dcd2103 View Post
Hi guys,

New to this forum. Have suffered with SFN for several years now. Just got some pirenzipine from a japanese pharmacy, arrived yesterday.

Wanted to revive this thread. Was curious if there were any updates on those who are trying pirenzipine or Oxytrol?
Hiya. Here is my experience using oxybutynin patches:

--I used the patches for 6 months and stopped taking my regular meds
--During the time I was on it, my PN symptoms seemed to improve; however, they did not completely disappear. Calf fasciculations remained as did periodic buzzing and itching on my thigh. That said, these symptoms were tolerable, and, for the most part, I was doing well with less noticeable symptoms and without meds.
--There are side-effects if you exceed the one patch dose that are not to be ignored, including cognitive
--Once I came off the patches, I went through a highly stressful period including international travel; in retrospect, this was a BAD time for me to stop the treatment
--My symptoms got worse again within a month of coming off the patches and probably somewhat worse than they had been prior to the experiment
--I am now back on notriptyline and doing much better

On balance, it is difficult to draw conclusions. I don't know how much the improvement I felt was due to placebo, springing from the hope it inspired. And, although the timing I stopped the treatment was really unfortunate, one would have thought the results might have been more enduring than they were if Oxybutynin is really efficacious in actually healing damaged nerves.

Obviously pirenzipine is the preferred option, particularly if applied topically.
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Old 04-07-2020, 07:30 AM #9
dcd2103 dcd2103 is offline
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Thank you street legal!

I'm currently trying to find a pharmacy to compound the pirenzipine. This is probably not giong ot happen however because of stupid rules. IF pirenzipine were FDA recognized it would be easy.

I've looked into the chemistry, and in the topical studies they used a free base. The pirenzipine you order is HCl, but thats just to make it water soluble and shouldnt affect it very much. I"m thinking I can crush it up, mix it in some DMSO (which makes you absord it), and absorb it that way. The chemist at one of the compounding companies who wanted to help me said this isnt necessarily a crazy idea, although you can never be sure about side effects.

Since oxybutin is FDA approved, maybe they will allow us to compound this?

My question to you is if this stuff helps rebuild the nerves, it shouldnt matter if its stopped? The results should last, in theory.
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Old 08-20-2020, 02:50 AM #10
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Quote:
Originally Posted by mncyclist View Post
Just posting an update. I've been on 100mg pirenzepine for about three weeks now. I'm not having any stomach issues and am tolerating it quite well.

Will report back again on neuropathy results.
Hello,

Are there any results yet?
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