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I am starting a new discussion about 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.

rashida | @rashida | Feb 4 11:19pm
In reply to @kdks99 "I read that Vertex is actively pursuing a global market...not sure where but I'll look for..." + (show)
@kdks99

I read that Vertex is actively pursuing a global market...not sure where but I'll look for it. I think it may be available in Canada sooner rather than later.

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@kdks99 is Vertex another generic of Suzetrigine?

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1 reply
charliesophiedaisyro | @charliesophiedaisyro | Feb 5 8:51am
In reply to @kimmygrl65 "Thank You for writing that,it sounds like something I would be interested in trying I've tried..." + (show)
@kimmygrl65

Thank You for writing that,it sounds like something I would be interested in trying I've tried so many things for my back pain including opioids ended up getting addicted to them and now am on Suboxone and would love to get off of that now. I've tried an injection that was supposed to help for that but it didn't work for me,my doctor said sometimes it doesn't work out for some people and lucky me I guess I was one of them. But anyway thank you for sharing.

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Have you thought of nerve ablation for your back?

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Nanci | @kildaren96 | Feb 5 9:00am

Dr. Jon Mandrola wrote a piece on it in Sensible Medicine. It’s kind of technical. He was not wowed but admits that he’s a cardiologist not a pain specialist. No mention about it for chronic pain. Scroll down to second article.
https://www.sensible-med.com/?utm_source=navbar&utm_medium=web

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kdks99 | @kdks99 | Feb 5 9:51am

Many thoughts but it's a novel pain medicine. so no for sure. I plan on trying it based on all the research I've consumed but there are no guarantees. Here's another opinion (neurologist I think). https://ca.style.yahoo.com/sanjay-gupta-non-opioid-pain-234257329.html

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kdks99 | @kdks99 | Feb 5 9:55am
In reply to @rashida "@kdks99 is Vertex another generic of Suzetrigine?" + (show)
@rashida

@kdks99 is Vertex another generic of Suzetrigine?

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No Vertex is the pharmaceutical company that makes Suzetrigine. It has been approved and should be available in about one month. It will be sold as Journavx. Here's one of the popular media articles about it but if you want to do a deep dive go to Google Scholar and search Suzetrigine. https://www.usnews.com/news/health-news/articles/2025-01-31/what-to-know-about-journavx-the-non-opioid-pain-medication-just-approved-by-the-fda#google_vignette

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kdks99 | @kdks99 | Feb 5 10:10am
In reply to @cheryl333 "That sounds so promising. I've been praying for a non-opiate pain med for us chronic pain..." + (show)
@cheryl333

That sounds so promising. I've been praying for a non-opiate pain med for us chronic pain sufferers. Percocet works great for me but doctors won't prescribe it anymore. They act like I'm a drug addict just for asking. I would love some more info on it and I have an appointment with my Pain Management doctor in a couple of weeks and I'll ask her if she's heard if it. Thank you so much for sharing!

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Wanted to be sure you saw this to share with your doc. https://www.journavx.com/support

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kdks99 | @kdks99 | Feb 5 10:14am
In reply to @tr1 "The brand name is Journavx (NA refers to the sodium channel blocker aspect, and NAV is..." + (show)
@tr1

The brand name is Journavx (NA refers to the sodium channel blocker aspect, and NAV is the gene that is targeted; X probably means they know it works on the NAV1.7 gene for people who experience genetically caused pain all the time, and are hoping it will work on other NAV1 genes for people with acquired neuropathic pain, such as pinched spinal nerves and diabetes).

IF it works on, say lumbrosacral radiculopathy, and IF Medicare will cover off-label RXs for office visit patients, we would probably have to give up Medicare Part C for Medicare to cover it. So that's something to think about if you take other expensive drugs, or see doctors less expensively with Part C than without.

It sounds like Vertex is going to do a larger Phase III trial. I wonder if they are enrolling patients for the trial yet.

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Wanted to be sure you saw this. https://www.journavx.com/support

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kdks99 | @kdks99 | Feb 5 10:15am
In reply to @delewis49 "Initially, I believe you are correct. In the next fiscal year, Medicare should negotiate a lower..." + (show)
@delewis49

Initially, I believe you are correct. In the next fiscal year, Medicare should negotiate a lower price per dose ($15.50) and we can start to see what the insurance carriers really are more frightened of, lawsuits from patients that develop opiate use disorders because they could not obtain Suzetrigine because they were denied coverage, or the cost (maybe $3.00 per 50 mg) of Medicare negotiated pricing.
I have never been at the accounting end of medicine so I have no clue which way it will fall. What I do know is that the high initial pricing will lead to many additional drugs of the Na 1.8 volt class being developed and cleared which will completely change market dynamics - eventually. Hope most of us can wait.

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Wanted to be sure you saw this and would welcome your thoughts. https://www.journavx.com/support

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