Update on SetPoint Vagus Nerve Stimulation RA Treatment
Some of you may recall discussions of the new FDA approved for RA treatment SetPoint Vagus nerve stimulation system. Four new papers demonstrate the effectiveness at the one year mark: https://www.businesswire.com/news/home/20251025399637/en/SetPoint-Medical-to-Present-Data-at-ACR-Convergence-2025-Demonstrating-Sustained-Efficacy-and-Safety-for-the-SetPoint-System-to-Treat-Rheumatoid-Arthritis.
See previous Forum discussions on SetPoint:
https://rheumatoidarthritis.net/forums/vagus-nerve-stimulation-experience
https://rheumatoidarthritis.net/forums/setpoint-system-just-approved-by-fda.
Will new research showing continued effectiveness for the SetPoint System get you to consider it?
I'd consider trying this so I spoke with my rheumatologist about it during my August appointment. While he didn't dissuade me, he was cautious.
He would like to see more long term study results and believes the actual placement of the device by a neurology team is key. He would advise, when its more widely available, to have it done at a larger hospital. In my area that would include Mayo or Barnes.My friend Richard is extremely good at parsing and presenting info, it is one of his superpowers so you can trust that is good stuff above, ha ha. I also agree that more results are probably wise, but I am not a doctor so that's just from my own personal belief and 40 years of living with RA. I have jumped onto new things before and paid the price, unfortunately, so I am wary. That being said, I do know one person who got it and swears by it, but, again, anecdotal evidence is just that - unofficial. I think checking with Mayo is a good idea as well! Let us know if there's anything we can do to help. Keep on keepin' on, DPM Hi
. I actually tend to be with both you and on being skeptical about trying this or any new treatment until there is some track record. That may apply even more to something that is implanted and attached to something like the Vagus nerve. That said, it is good to see these kind of results at the one year mark.
There are still plenty of questions I'd like to see answered, such as info on which patients the treatment is found most effective for. For example Dan and my wife, Kelly Mack, were diagnosed as children and have a lifetime or RA. Does the RA still respond and is it worth it if there is already extensive damage? There may be some answers emerging for these and other questions and a first rate research hospital makes sense for getting answers, as well as the actual procedure. Best, Richard (Team Member)
, I agree that does an outstanding job at explaining medical speak to so many of us. It is a super power! I have learned a lot from his posts.
One thing that I have noted with the SetPoint system or vagus nerve stimulation is its use in a large range of conditions. I can't quite decide how I feel about that. Is relief really this simple? One nerve and one device? And if so, have we been led down the wrong path for a mighty long time? Or is this the latest craze sort of like those "as seen on TV" sales pitches 😀, your raise an excellent point about what about the damage that's already been done and the pain it causes. In spite of years of treatment, my joint damage continues. This device can't turn back that clock.
One article that I read in the NY Times mentioned a risk, however slight, of developing an infection at the placement site. Those infections have been hard to treat. That tidbit made my husband raise an eyebrow.
I think for now I will gather information and wait and see.
, I often take the long way around in my thinking process and get lost on a rabbit trail. (Its drives my engineer husband nuts.)
Your posts here do bring clarity.
When reading vagus nerve stimulation articles, I noticed more than just autoimmune conditions listed. Epilepsy, stroke rehab, migraines, sleep disorders, depression and Parkinson's are just a few examples. That surprised me.
It would be amazing if this procedure could address so many of the conditions that people suffer mightily with. I found it surprising because I was looking for commonalities in all of the diseases listed. And then I got lost.
Inflammation, once it goes rogue, can destroy so much. Is research indicating inflammation in disease processes we had never before considered?
If stimulation of the nerve works as hoped, it will truly be a game changer.Hi
. Forgive me for just noticing the question near the end of your post. I think the variety of conditions that vagus nerve stimulation is being tested on has more to do with just how centralized the vagus nerve is to many bodily systems. For example the research into things like epilepsy, depression, Parkinson's, stroke, and migraine all seems to focus on the neurological connections. In fact, it seems that it is only in relation to autoimmune conditions that research into vagus nerve stimulation focuses on inflammatory origins and blockage. These differences is why pinpointing how to stimulate the vagus nerve is so tricky for each condition. Best, Richard (Team Member)
I am much more optimistic about this and would do it in a heartbeat. As someone who has other autoimmune conditions and the resulting complications (slow digestion, etc.) research I have been reading is quite encouraging. There are currently external devices that can be used if internal implants are considered premature and used as a trial. They’re expensive but only need to be bought once. Right now I have been using the “tricks” like deep humming (yes this is a thing), laughing, etc.—all which stimulate the vagus. But I will likely try a highly rated external device and see how it goes. WTH, all my autoimmune conditions are incurable. I’m much more open to trying new things.
Hi
. Completely get what you are saying. There is a point where trying something different, especially when it comes to chronic conditions, is totally logical. It is good to see that research is finally focusing some energy on curative options, instead of just managing. Best, Richard (Team Member)
