Anyone use perispinal etanercept for stroke recovery?

Hi, @pete555947 - Thanks for posting this information in the Stroke & Cerebrovascular Diseases support group.

I looked further into this procedure. I learned this treatment, perispinal etanercept for stroke recovery, is not yet validated in the U.S., as it's still being researched. The publications below offer additional information:

- Practice advisory: Etanercept for poststroke disability
Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology
https://www.neurology.org/doi/10.1212/WNL.0000000000002735
- Review
Perispinal etanercept stroke trial design: PESTO and beyond
https://www.tandfonline.com/doi/full/10.1080/14712598.2024.2390636

I did a lot of research before I scheduled my appointment. I have 2 reasons for my original question. Has anyone that reads this done this procedure? and - To make others aware of this treatment as an option if they are living with disability after a stroke.
There has been a validation of the procedure in Australia
Validated by a 2020 randomized, double-blind placebo-controlled clinical trial(1). The randomized trial documented “… rapid and wide-ranging benefits achievable by treating stroke patients with PSE,” findings supported by and originally reported in observational studies published by Dr. Tobinick and his colleagues beginning in 2011 (see below). In 2018 the Australian government designated funds specifically to run an additional randomized, controlled trial of PSE for stroke in Australia. From what I am told, the only downside is that it doesn't do any good in the case that one has permeant brain damage. However, as one can see in the dozens of actual videos on Dr. Tobinick's site this drug can reactivate brain cells that have gone into hibernation, even after more than 20 years.

I got my shot of perispinal etanercept on March 18th and other than what I believe was relief for some of my neck muscle tightness and vocal cord symptoms I have had no positive results from this shot. It has been almost three months since the shot and the neck muscle relief that I've had has subsided back to normal or back to what it was before and I have had no relief from my stroke symptoms. I don't know why it worked so well for many others and didn't work at all for me but it was worth a try.

That's a shame this shot did not seem to work for you. I've noted with medications I've taken (asthma inhalers, weight loss shots, allergy pills) that my responses have been sometimes better and sometimes worse than I've seen in others I know. I guess we really are all different.

I'd like to tag some others who've talked about stroke recovery on Connect and see if they are familiar with and have any thoughts about perispinal etanercept for stroke recovery, including @nilosalamat50. @japlok @annie1393 @lindapc @searcher1.

Unfortunately, I cannot offer an opinion or results from getting a PSE for a stroke. I inquired about it because my wife has been diagnosed with early onset Alzheimer's and Dr. Tobin has used PSE on Alzheimer's patients and has had some good success. Saw a 60 Minute episode about it. I guess I can offer an opinion by saying that everyone reacts differently to medication and maybe if there is an opportunity to try it again you might have better results. All the best to you @pete555947

Lisa, I have no idea why am I shot didn't work. I watched dozens of YouTube videos of successful shots that doctor Tobinick gave to people with the same symptoms that I have. However, because to have the shot given by doctor Tobinick himself would have required a much longer wait I opted to have his physician's assistant give the shot. I have no reason to believe that that made a difference. When I got no result I called their office and ask about talking to doctor Tobinick about the question of another shot to see if I got better results and she told me point blank that if I got no result from the first shot they didn't recommend having a second one. She said doctor tobinick won't talk to patients it is very seldom in the office but if I send an e-mail she will read it to him and send me a reply. I have not done that.