Set Point Medical device for Moderate to severe RA thus far
I suffer with PMR since 12/24 25 mg prednisone down to 1 mg until 3 weeks ago could hardly move excruciating and I soon realized, I needed to go back up to 5mg 1 week later I’m 75% better !
hearing of the newly approved by FDA SetPoint Medical devise for people suffering with moderate to severe RA will be a game changer for those with inadequate response or intolerance to the medicines, prayers for it to be approved for other autoimmune diseases soon like PMR !
Best to all Bev
Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.
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Yes! The research that led to the device was done by the Feinstein Institute in my neck of the woods on Long Island! My son’s girlfriend works at the same institute and reached out to that department to see if I’d be a candidate for them during the trials (but it looks like I may have something more neurological going on and am not a good fit). Hoping it becomes available for other conditions as well!
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5 ReactionsDoes anybody know the name of any trials that can be looked up related to Setpoint Medical‘s device?
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1 ReactionI am a nurse with RA and need something that won’t cause the side effects of biologic drugs I would really like to try this. Set point VNS device How do I do this please and thanks.
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2 ReactionsWelcome @zoyetsa7, I'm not familiar with the SetPoint Medical Vagus nerve stimulator but did find a research article link on their website (https://setpointmedical.com/vagus-nerve-stimulation-for-rheumatology-maybe/). Here is the article from 2019:
-- Vagus nerve stimulation for rheumatology? Maybe
https://www.mdedge.com/rheumatology/article/194822/rheumatoid-arthritis/vagus-nerve-stimulation-rheumatology-maybe
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1 Reaction@zoyetsa7 Welcome to Mayo Connect - Like you I have RA, and am trying to minimize the number of drugs I take to control it and to relieve pain, so I was excited to see that the FDA has approved the device.
https://setpointmedical.com/
When I mentioned it to my rheumatologist in October, he felt that we needed to watch the rollout and see the longer-term reports of relief. That made sense to me, as i have another rare disease, Bronchiectasis, for which the first-ever drug was approved in August.
In the MAC & Bronchiectasis group on Connect, we are watching closely to see how the medication works out in the "real world" compared to the very tightly controlled test population. It's still too early to say for sure, but it looks like the answer it that it helps some people and comes with significant side effects for others.
Here is an article about the device from the Arthritis Foundation:
https://www.arthritis.org/health-wellness/treatment/treatment-plan/disease-management/rheumatoid-arthritis-vagus-nerve-therapy
PS My orthopedic surgeon was an "early adopter" of a newly-approved hip implant back in 2006, and I followed his advice. It was a disaster, as I ended up with heavy metal poisoning and 3 major revision surgeries a few years later. I live with permanent after-effects like a tremor, unstable thyroid, and racing heart. So I am quite skeptical of devices and medications until proven by time.
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3 ReactionsSetpoint Medical has not released a list of any hospitals that they have made arrangements with. From my understanding, they are in the process of putting it out into the marketplace.
When I asked someone in the rheumatology department at Mayo about it a month ago, that rheumatologist said that they had been discussing it but Mayo in Minnesota would be reviewing it for their use there and at the Mayo Clinic in Jacksonville, which is where I inquired about it. She said the discussions were about rollout and not additional trials as it had been approved by the fda in July.
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2 Reactions