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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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I think it's working for me, as well. If you're comfortable sharing, did it work immediately? I think it helped me over the period of a month.
Very happy to hear it worked for you. It didnt' work for me and another patient of my doctor.
I know this isn't not consistent with the pharmacology but it took a full month to really notice an impact. My pain doctor said it would require upping the dose to 100mg, twice a day which a did for a few days...I know the placebo effect is a real thing but I have tried so many things over the years and i was never lucky enough to experience that so I'm probably not susceptible.. If you tried it for a month...as an adjunct to other meds and it didn't work I am so sorry you're back to square one. If you didn't maybe discuss this with your doc?
thank you. I only did the two week course per the trial. I may try a longer dose as you did.
I am a sample size of one, but this has been my experience thus far. I do not think Journavx will be sufficient as a stand alone treatment for chronic pain. I previously was taking Tylenol arthritis and 200mg of Celebrex. There was a very marginal, if any benefit. My pain doctor suggested I continue with that protocol and add the Journavx, and I did. He believes this will be an adjunct to other meds and I think he is correct. I don't know the source of your pain but I think trying it for a longer time in conjunction with previous meds might allow you to access the efficacy. It is NOT a panacea...take a pill pain is gone but I have tried many many things over the last 6 years and this is having a positive impact. Unfortunately I have never been susceptible to the placebo effect...I always wished I was.