Shingrix and peripheral neuropathy

@jesfactsmon @sunnyflower What a conundrum. I had chickenpox in high school and a mild case of shingles in my early 40’s.

@dont
Don, as you already know, but others may not, both of these articles that Colleen has placed here on your behalf relate to the antimuscarinic drug pirenzepine, which is being repurposed to help prevent and possibly reverse neuropathy symptoms. The implications for this are pretty exciting. There are trials ongoing, and from what I gather they may be into phase 3 trials by now. The company spearheading the effort, Winsantor, stands to gain tremendously from this if it successfully becomes an FDA approved treatment as there are many millions of people who might potentially become their customers in effect. I for one am hoping for the final breakthrough to happen. With so much to gain for whoever finds the magic bullet it seems like it's only a matter of time when something big is going to come along to help PN sufferers. Hopefully, this is it. Best, Hank

Did you get the sense your Neurologist might know something about a Class Action Suit or Tort?

Hi @dont
No, I don't know of any lawsuits against Shingrex, but I'd be surprised if there weren't any. Pharma gets sued for almost anything these days, whether there is merit or not. And remember, no medicine or vaccine is perfect or without adverse reactions. The overwhelming evidence is that Shingrex benefits outweigh the risk by many orders of magnitude.
A cursory web search will turn up numerous class action suits against Zostavax.

Try the regime given you and give it time to work...no two paths are the same.

@dont, I noticed that you wished to post a URL to web resources with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the links you wanted to post are not spam, so allow me to post it here.

Don, found these 2 articles on potentially reversing PN:
- Study finds drugs that can reverse nerve damage https://www.sbrc.ca/2017/01/study-finds-drugs-that-can-reverse-nerve-damage/
- Anti-Muscarinic Drugs May Reverse Peripheral Neuropathy https://www.practicalpainmanagement.com/resources/news-and-research/anti-muscarinic-drugs-may-reverse-peripheral-neuropathy

There are risks with almost any medication, vaccine, treatment, or procedure and while the risk may be "low," some people have adverse reactions that are serious. The CDC URL below has information on how to report an adverse reaction through VAERS website (https://vaers.hhs.gov/), or by calling 1-800-822-7967.

CDC
https://www.cdc.gov/vaccines/vpd/shingles/public/shingrix/index.html
It's so important to have an open dialogue with your provider and that they listen and explain their treatment recommendations to you. Then you and your provider can weigh the pros and cons of the treatment. I know this doesn't always happen.

Sometimes when I go to my provider, my provider seems inpatient and then I feel uncomfortable asking numerous questions. It's obvious they don't want to or feel they have the time to address all of my questions and concerns. Does anyone else feel this way?

@jeffrapp @sunnyflower @magnum52 @memomsloan and others. How would you approach providers to feel heard and get the answers to your questions?

Gabapentin works for very few people. It’s basically an anti-seizure drug. I assume you had a skin biopsy to confirm SFN, which is about 88% accurate. I have been diagnosed with idiopathic SFN. My guess is that your blood work for heavy metals and B6 will be normal. Doctors have very little in their bags to effectively treat SFN, so they just keep changing medication doses. Next they probably will try Lyrica, another anti-seizure drug. Cymbalta, a SNRI, May end up,being your best bet, but it not great either. My industry, the pharmaceutical industry, has not taken the problem very seriously. I wish you luck on this miserable journey, but don’t expect much help from physicians.

Thank you Colleen