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.

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

@carolynhughes75

Please tell me what the 2 supplements are that can help PN. I developed AIDP as a complication of covid. It is so painful.

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I have neuropathy from chemo also. I have found that taking an ice bag and holding it in the palm and then on the other side really helps. I let the hand get very cold before flipping it over. I'll give it time to return to normal temperature and do it again. I do the feet the same way. I soak them in Epsom salt and I add a few ice cubes to water. Not too cold though. I couldn't believe how much better the neuropathy was the next day. I need to do it every day but I don't and I can tell because the numbness slowly starts coming back. For those 2 or 3 days though it was the best feeling. I could actually pick up a pill I dropped with that hand. 😊

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The CDC still recommends opioids for long-term chronic pain. I have that for a problem that can’t be fixed ALL of my doctors are supportive where I ditch them. About the nerve pain. I just spoke with my surgeon yesterday and we talked about this exact thing. It can take up to 10 years for nerves that are damaged to be remodeled or to be considered permanently a problem. I have some of those nerves that were squished in my L3 L4, L5, major nerve root for way too long because a neurosurgeon wouldn’t do surgery. When the nerves are damaged, they can cause inflammatory reactions. So if you can isolate the nerve branch in route, you can deal with the inflammation that causes the pain. If you can isolate and treat the inflammatory reaction, then you can get pain relief. In my case, it doesn’t last more than a month, but because there was nothing else anyone was willing to do. I started on a ramped up exercise program, and that has taken care of the unbearable pain. I ride my stationary bike and answer Mayo Clinic forum messages for an hour hour and a half every day, and it never gets dull.! What that did was amazing for my nerve damage which runs from my sacral joint to my hip to the outside of my knee to my shin to the top of my foot to my big toe on the left side, it’s all where the nerve was damaged when the disc fell completely out seven years ago, and my vertebrae grafted themselves together. When they did that, I actually had no pain, but the surgeon I saw, which is my prince wanted me to rush and do surgery for which I was ready after 20 years of unsuccessful stuff. It was amazing the relief I got except for it seems that my nerves on that side are damaged after seven years yet still. He increased an exercise now is handling that. I am so exhausted when I fall into bed that the pain doesn’t wake me up anymore and I can sleep through the night. The pain is also very minimal to nonexistent during the day. this morning it was foggy and drizzly here in San Diego and I was pretty miserable and I was up last night from all kinds of aches and pains, which are arthritis and inflammatory related. I know some days are gonna be bad and that’s that. I go to a great surgeon and I have a great team of doctors that I pick and choose carefully. I’ve gotten four opinions on the spine surgeon and so I met my true Prince and there I will stay. I go four times a year, maybe three or two depending on where I am in process but now that I’ve started this extensive gentle exercise routine. My report yesterday at the surgeon was absolutely glowing! There has been zero deterioration over the last three months when I started the exercise program before that there was slight deterioration every three months in the x-rays. @heyjoe415 discuss the miracles of physical exercise in this group and I apologize to him that I didn’t get back to his last message but I’ve been so busy with managing the 50 year reunion and doctors that I’ve had no time to respond much! Good luck!

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