Have you used the new vagus nerve stimulator approved for rheumatoid a

Posted by annewoodmayo @annewoodmayo, Sep 25 3:21pm

Yesterday I read about a vagus nerve stimulator device that the FDA recently approved for rheumatoid arthritis.

Has anyone used it for other autoimmune disorders?
Do you know anyone who has used such a device? Could you share information?

Thanks! Hang in there 🙂

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Janell, Volunteer Mentor | @jlharsh | Sep 25 6:46pm

Hello @annewoodmayo - this is a great question. You can find some more information on vagus nerve stimulation at Mayo Clinic here (though it hasn’t been updated with your FDA approval finding). It doesn’t mention other autoimmunes but maybe reading about other conditions it is used for will be useful to you.
- Mayo Clinic Vegus Nerve Stimulation: https://www.mayoclinic.org/tests-procedures/vagus-nerve-stimulation/about/pac-20384565.

Typically, nerve procedures or diagnoses involving the nerves are seen by the Nuerology department. If you'd like to seek an appointment or a second opinion at Mayo Clinic you can use this link to get started, http://mayocl.in/1mtmR63.

@annewoodmayo, if you are comfortable sharing, are you dealing with an autoimmune that interests you in this form of potential treatment?

pb50 | @pb50 | Sep 28 4:21pm

Fascinating!! Which autoimmune condition is it being applied to?

lisag03 | @lisag03 | Sep 29 11:46am

I don’t have RA, but a good friend does. She was part of the trial and still has her stimulator. It has helped her so much. It took some time getting used to; and any time she needs a scan, she has to go and have it turned off. But she is glad she took part in the study and she hasn’t gone through many flares

mayo99824 | @mayo99824 | Sep 30 5:30am

Fascinating. After my first total knee replacement due to arthritis, I developed atrial fibrillation which is also linked to the vagal nerve. I wonder if there is a connection. PS . I had an ablation and have had no problems with afib since. Knock on wood.

pm56 | @pm56 | Sep 30 9:29am

It's the SetPoint device. Research was done by the Feinstein Institute. As someone above said, it does have to be switched off before an MRI but other than that, there don't seem to be many other downsides. My son had a vagus nerve stimulator implanted in 2016 to manage his epilepsy (it's been life changing!) and the only other side effect is that when it goes off, it does change the tone of his voice. His is set high as he's been difficult to treat and that's something that he's more than willing to trade off for being able to drive. Also hoping that it becomes available for more conditions as time goes on!
https://www.northwell.edu/news/the-latest/fda-approves-first-vagus-nerve-device-to-treat-rheumatoid-arthritis