1. < Chronic Pain

Suzetrigine - a novel drug for pain

Posted by kdks99 @kdks99, Jan 26 11:32am

ok...So here's what I know and what I think is true. This drug was FDA fast tracked. The results of the phase 3 clinical trial for acute pain were very good. It was on track to be approved on 1/30/25 but due to an executive order regarding FDA communications it is not clear if the FDA will be allowed to release the approval or not.
https://www.goodrx.com/conditions/pain/opioid-alternatives
Vertex completed a phase 2 study and the results were inconclusive due to poor study design. After reviewing the results it is my opinion if a better designed phase 3 is approved the results will be similar to the study for acute pain. This is the first new non-opioid pain medicine in 20 years.

Once it is approved I plan on insisting my doctor writes an off label script so I can try it even though my pain, like your's is chronic. The side effect profile is excellent..i.e. there were actually MORE side effects in the placebo arm of the study... doesn't get better than that.

That being said, there is no information on the side effects for chronic pain, which would require long term use but after reviewing the research i will take a chance.

I am not sure about how the medicare coverage will work, but once it is approved I will look into it and share with you here. I think they may have to pay for it if your doctor writes a script off label or not.
https://www.nopainpact.com/pdf/Nopain_Act_Guide_Implementing.pdf
This has the potential for being a game changer so I think we need to educate our doctors and do
our own research.

Please let me know if I can provide links to more information that might help you.

Like Helpful Hug

Interested in more discussions like this? Go to the Chronic Pain Support Group.

loriesco | @loriesco | 1 day ago
In reply to @flyjim "Muscle strengthening has to be done by doing physical therapy. Core strengthening is a must. I..." + (show)
@flyjim

Muscle strengthening has to be done by doing physical therapy. Core strengthening is a must. I do PT 4 days a week for a hour. Wednesday I do a hour long yoga class.
Sorry to hear the stimulator is not working well for others you have encountered. I was confused whether or not you had the implant. I don’t quite understand why it doesn’t work for them. The science is real. The electric impulses interrupt the pain signals from the back. The medical community is satisfied with a 50% reduction in pain.
I have gotten at minimum,
80%. I’m thinking that they had a preconceived conception that it’s pseudo science and it probably won’t work. In addition you have to have a temporary one in for 5 days to make sure it provides relief. If it doesn’t or you’re not satisfied in the amount of relief you don’t go through the permanent implant surgery.
I’ll close with the following that I tell people who criticize my decisions to have back surgeries(3), every injection available, 2 years of ablations and finally the life changing spinal stimulator.
I say to them, either your pain is not acute enough or you haven’t been in pain long enough. Cause if you have had acute pain for 4 decades like I have you will do anything in the world to get any relief possible. Even if there is no guarantee of any success. Remember, PT is an absolute must.
I wish you well.

Jump to this post

Don’t please don’t be offended. I am so happy the stimulator is working for you and I don’t want you to worry about what will be. You asked “ why the stimulator doesn’t work for them?” I can give you one reason from a friend’s personal experience because they need surgery. Some of us have degenerative disc disease and other accompanying degeneration. The stimulator does not stop ongoing degeneration so if one’s pain is masked or interrupted, that is coinciding with continued lumbar deterioration And some people. That’s why it might work in the beginning and not work later. It is the same with exercising exercising can postpone and prevent a few surgeries, but eventually, gravity and weight are going to win out when the lumbar discs are pushed out of the places where they need to cushion. I see a lot of top-notch doctors and they try to limit invasive surgeries.. And the stimulator implant may be good for a particular type of lumbar condition. When my pain actually stopped because my disc fell out entirely and my vertebrae’s did their own self surgery and grafted together it meant that my nerves were being crushed to nonexistence. That was not a good thing. My surgeon wanted to do surgery right away. It has been seven years six years and my nerves are probably permanently damaged from having been crushed for so long. There is some kind of pains which signal the need for attention. And there’s some kind of pains which just need to be alleviated. In today’s day and age, we also have to be careful that patients get sufficient attention, such that the doctor can actually isolate the pain diagnostically so they know the reasons for why it exists and then they can offer the best treatment. I’m so glad it’s working for you and I hope it will always work for you.
Also, I have a tens unit and the electrical stimulation of the tens unit also works on the same principle and it can stimulate muscle growth so that was why I asked the question about the implant stimulator.

REPLY
View MoreView Less
Please sign in or register to post a reply.