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?

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.

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.

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.

Indeed.

As stated, I stopped using the patches at the worst possible time--just before I embarked on international travel, long-haul flights, and stressful circumstances. I was highly conscious of the stress, both physical and mental, I was putting myself under. And there is no doubt at all that stress is highly embodied for me--even positive emotions set off my paresthesia.

That said, if oxybutynin were implicated in healing damaged nerves and not just suppressing symptoms, one would have thought that I would have withstood the stress.

In short, within a month of coming off the patches, my symptoms were probably worse than when I had embarked on the experiment, if I am to be brutally honest--that is, pain set in rather than just buzzing and itching.

On the other hand, a self-trial of a patch designed for other purposes is hardly an ideal setting, involving a host of variables.

Hi, I think this is a great idea, have you managed to make any progress with this ? Its something that I would love to replicate.