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Old 04-12-2021, 09:02 PM #51
twitchy_bar twitchy_bar is offline
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Quote:
Originally Posted by caroline2 View Post
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, 04:27 PM #52
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Originally Posted by mhw69 View Post
You should be looking for Oxytrol. It is a transdermal patch used for bladder spasms. I am trying it right now with interesting results. I have less numbness / improved sensation in numb area of feet, more skin wrinkling in water with my hands ( improvement in autonomic neuropathy), more tingling in neuropathic areas (maybe Tinel's sign for regenerating axons).

It is a bit of a mixed bag though because I still experience stinging pains and the electrical pains. However, I just read a paper that said that these pains occur with regenerating axons because of changes in the number of sodium channels. The issue appears that continuous neuropathic pain is an ongoing regeneration process that never succeeds in fully reinnervating the tissue. Ironically enough the people who just develop numbness without pain have a less healthy peripheral nervous system because no regeneration is going on. They just lose nerves and go totally numb. The people who have pain going on have regeneration happening but the regeneration is overwhelmed by the neuropathic disease process. Some researchers are trying out drugs to turn off the regeneration process to bring relief to people with pain where there is no hope for successful regeneration. Personally, I would be reluctant to use it.
Hello,

At age 74 and little to lose, I want to acquire pirenzepine topical to have a shot at improving my life before it gets past the point of no return. How did it work for you and what suggestions to you have?

Regards.

Chris
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Old 05-10-2021, 04:35 PM #53
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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 05-12-2021, 09:08 AM #54
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are there any avenues for "compassionate use" available during trials as I understand that this therapy will not apply to those whose nerves are destroyed meaning you must have some residual nerves available. for long haulers, or those who are becoming long haulers post diagnosis, by the time pirenzepine is available, it will be too late.
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Old 05-14-2021, 09:40 PM #55
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For anyone who might want them, I have a whole load of Oxytrol boxes, unopened if anyone in the San Francisco area wants to take them off my hands for free. I stopped the treatment over a year ago and went back on nortripyline.

Oxytrol contains pirenzipine.
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Old 06-23-2021, 07:30 AM #56
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Smile My pirenzepine experience so far

Hi I am new to this forum and thread.
I have had peripheral neuropathy for a few years now and it has been getting steadily worst. I had it in my feet and I resisted medication as long as I could but it was getting dangerous driving so my doctor put me on lyrica.. I needed 150mg twice a day to control my symptoms but side effects were not good so I compromised with 125 mg twice a day with some PN symptoms but tolerable. However I then had a COVID vaccine first jab and my PN went crazy…and the PN started in my hands….nothing would stop the pain and it went on like this for 4 weeks…I thought this would be the end. Constantly reading everything on the net I came across the studies of pirenzepine and ED medication Cialis and people posted on reddit experience with both.
I am so over this PN affecting my life every moment of every day it can drive you crazy and if it does t then drugs like lyrica will.
I ordered pirenzepine online via what seemed a dodgy online site via a London bank account and the drugs shipped from Japan. I also ordered 50 x 20mg cialis from an online chemist.
The scientist in me wanted to just try each individually to see what worked but the impatient patient just wanted to fix this ASAP.
I started taking the pirenzepine orally 50mg twice a day . I also started taking cialis 20mg every second day.
After one week my PN symptoms started reducing and I cut my lyrica down to 100 mg twice a day… don’t get me wrong I still get pins and needles but they felt different … no burning or overwhelming sensations anymore.. I stopped the cialis for a day or two as I thought it may have been affecting my hearing but no it was al good.
I am now at the end of week two and I am now on 75 mg of lyrica twice a day. Still taking pirenzepine 50mg twice a day. I have jumped online and bought 4 more boxes.
My PN is not flaring anymore and seems to be slowly getting better . I can feel the accelerator pedal under my foot now so driving is much more comfortable. I figure it will take several months for my nerves to recover. I still have lots of pins and needles but no real pain anymore.
I will keep my progress posted for anyone interested. Sympathies to anyone and everyone suffering with neuropathic pain. I don’t recommend doing what i am doing just letting everyone know my experience.
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Old 07-31-2021, 02:30 PM #57
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Quote:
Originally Posted by caroline2 View Post
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 #58
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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 #59
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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

EVMS Pulse Newsroom | Eastern Virginia Medical School | Media | Press
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Old 11-02-2021, 06:38 AM #60
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Hi, I would be interested in this information also.
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