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I am starting a new discussion about Suzetrigine a novel drug for pain
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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HugInterested in more discussions like this? Go to the Chronic Pain Support Group.
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Please don’t think this works. It has serious side effects. During Vertex’s drug trial, the placebo ranked higher in pain relief. You can read my detailed post below.
Read my post below. This site won’t let me copy/paste the content of it. Vertex is a horrible drug.
This is for short term pain, like post operative pain. This is NOT for chronic pain. This leads me to believe that there are serious long term side effects. So this shouldn’t be posted on a “Chronic Pain” site. We have so many things to read up on that sometimes it’s overwhelming.
Ask your pharmacist!
You're clearly upset..If you read my posts I am well aware of the phase 2 results for chronic pain. In my very humble opinion it was clearly a poorly designed phase 2 trial and I have some hope that the better designed phase 3 trial will have better results...but we will see. I did not see an indication of serious side effects in the clinical research but as with any new drug we just don't know. I am a chronic pain person and I am totally supportive of all of us getting whatever medication helps...I have absolutely NO judgement about people who use opioids to manage their pain. I have spent a lot of time reviewing the research and understand the mechanism for this drug and this is something I will try knowing it may not work or have unexpected side effects. I hope you are able to access whatever gives you relief! here is a link to the research I referred to. Again this is a novel pain medicine and no one knows for sure...https://link.springer.com/article/10.1007/s40122-024-00697-0
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1 ReactionThey have no idea..but thank you for your kind suggestion.
Hello @kdks99,
You may noticed I removed some of the replies with links to journavx. By posting, everyone who has participated in this discussion will receive a notification. Another useful route if you'd like to call attention to specific member may be to post the link and then tag each member by using the @ symbol and then their username. You can tag as many members as you'd like in a single post.
If I am understanding correctly, is https://www.journavx.com/support a link to a site that will be a copay assistance program to help offset prescription costs? Or is this specific to the medication that is being researched? Many medications on the market do have co-pay assistance programs to help patients offset medical costs.
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I'd like to also insert a gentle reminder of the Community Guidelines (https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/) that help keep the tone safe, supportive, inclusive, and, above all, respectful.
Please keep in mind that we only have words on the screen to communicate our experiences, thoughts and support. Without the benefit of tone of voice or body language sometimes the messages may be interpreted incorrectly. And sometimes we bring the bias of our own experiences when reading the post of another member.
I encourage you to review the guidelines and pay particular attention to guideline 2. Here's an excerpt.
2. Remain respectful at all times.
- Exercise tolerance and respect toward other participants whose views may differ from your own.
- Disagreements are fine, but mutual respect is a must.
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4 ReactionsI am not upset, I just don’t believe a drug that’s been tested and PROVEN to cause serious side effects, all while their placebo in the trial had better pain relief, should’ve been posted with that info. You just gave many people hope where there is none. Have you read any other articles about this drug? The link you sent is from the owner/manufacturer; they tend to obscure, or leave out, bad information on their drugs. “As with any new drug we just don’t know.” Yes, we do know because it was tested. Try to research Valtrex again; I’m sure you’ll find better information. If I come across the articles again I’ll post them.
Does anyone know if it can be taken safely while taking or titrating down on opioids? Any interactions between them? When I stopped taking traditional opioids, and switched to buprenorphine, it was quite a process.
just trying to do a good thing.. please remove this discussion