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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kdks99 | @kdks99 | Mar 26 11:30am

In reply to @dg7 "What side effects did you have? Ty" + (show)

I urge you to check the reported side effects in the clinical trials for acute and chronic pain. In both the side effects were less for Journavx than placebo. I try to use evidence based information in making medical decisions. I have been taking for a few days and no side effects.

bumber | @bumber | 5 days ago

I am sorry to report that I just finished a 2 week course of Journavx and saw no improvement. My doctor had one other patient on this drug who also showed no improvement. I’m extremely disappointed. Maybe this new approach will improve with research and become more effective.

kdks99 | @kdks99 | 5 days ago

In reply to @bumber "I am sorry to report that I just finished a 2 week course of Journavx and..." + (show)

My pain doctor said the dosage of 50mg 2x's a day was not going to be effective. He suggested 100mg 2x's a day. I tried it and although, not a panacea, it helped with no side effects. Of course, at least for me, it is much too expensive and my insurance will only pay for a small part and approve the 50mg dosage.

rashida | @rashida | 5 days ago

In reply to @bumber "I am sorry to report that I just finished a 2 week course of Journavx and..." + (show)

@bumber some medications take at least six weeks to show results … perhaps Journavx is one of them …? 🤷🏼‍♀️

The expense alone would be a deterrent, though …

bumber | @bumber | 5 days ago

In reply to @kdks99 "My pain doctor said the dosage of 50mg 2x's a day was not going to be..." + (show)

Glad it worked for you. I have a few pain areas. However, my worst pain now is in my feet. Particularly big left toe. Where is your pain that Journavx helped? Thank you

bumber | @bumber | 5 days ago

In reply to @rashida "@bumber some medications take at least six weeks to show results … perhaps Journavx is one..." + (show)

As the drug trials went no longer than 2 weeks, I was given the recommended dosage and duration. I don’t think its a long cumulative effect in order to work.

kdks99 | @kdks99 | 5 days ago

In reply to @bumber "As the drug trials went no longer than 2 weeks, I was given the recommended dosage..." + (show)

It is not cumulative and it has a short half life. There was a phase 2 clinical trial for chronic pain but it was very poorly designed. That lasted 3 months. The dose was still 50mg but my pain doctor understood the mechanism of this drug in depth and was aware of the 50 years of research that went into the development. He was very adamant that the dose was too low but who knows? This is a novel drug...there could be unexpected side effects at a higher dose, regardless the price is astronomical.

bumber | @bumber | 5 days ago

In reply to @kdks99 "It is not cumulative and it has a short half life. There was a phase 2..." + (show)

agree we are in uncharted territory. I just hope this new path for pain meds will evolve into something helpful.

kdks99 | @kdks99 | 4 days ago

In reply to @bumber "agree we are in uncharted territory. I just hope this new path for pain meds will..." + (show)

FYI my pain doc said it's fine to take with "rescue meds" NSAIDS Acetaminophine which I do take or even Tramadol which I choose not to take. I'm a nerd so i tried to send you the research trajectory which was very interesting but this platform blocks AI generated material..You can find it by using Chat or deepseek and asking this "detail the 50-year research arc behind this drug, synthesizing hard data from patents, NIH archives, and biotech development timelines" I am a big nerd so probably boring to most.