Suzetrigine - a novel drug for pain

It looks to me as if this Journavxn is a "Pie-i-the-Sky" drug that may never live up to the hype. Like many new drugs, the initial cost is prohibitive. Even if the price comes down, it doesn't appear to be effective for neuropathic pain.

Could be,,,the research on diabetic neuropathy is, I believe in the phase 3 trial...Who knows if it will continue to be funded..The research for a phase 3 trial for lumbar radiculopathy, after a poorly designed phase 2 trial.was meant to proceed I'm sure that funding is in jeopardy, as well. My experience thus far, which clearly means nothing in terms of broader efficacy, was 50mg 2x's a day did nothing discernible. At my pain doctors urging I tried 100mg 2x's a day. I continued taking Celebrex once a day and tylenol arthritis 2x's a day. Adding Journvx made a difference. Having said that there could be unforeseen side effects at this dose....a risk I would take but it is unaffordable.

kdks99 Not boring at all! I think you are a great researcher and, I for one am very interested in all your posts because I am learning a lot from you!

I said I would report on my experience. My insurance did cover a one month supply and I an reaching the end of the month and for me...I stress I am a sample size of one, it helps but it took a while. That doesn't make sense based on the pharmacology but that is my experience. I still take Tylenol and Celebrex, as I had been. At the 3 week point I started to notice an improvement...I'm not running marathons but I went to party last weekend. I tried a 100mg dose for a few days at my pain doctor's suggestion and that was better but obviously not affordable. As of yet, no side effects, but no one knows side effect profile with long term use. My insurance company finally agreed to partially cover it for a year and it works well enough and i stress FOR ME that I will continue in spite of the expense. If you have no insurance at all Vertex may work with you. I hesitate to share this because it really has no relevance to others...this is just my experience. They always want numbers which is ridiculous but I would say the improvement is about 2 points. Just an FYI.

Suzetrigine is not the panacea we had all hoped for. It turns out that I cannot take Suzetrigine because it triggers seizures for me. 9 days ago, after being on it and feeing grateful that finally something was reducing my neuropathy pain, I had 2 seizures in the evening. The second caused me to fall onto a sturdy rocking chair (breaking it and bruising one side of my body) and then landing face-down on the floor, nearly taking out my left eye. I have a partially blind right eye, and if I'd lost my left, I'd now be officially blind. I'm off suz now and the pain has come roaring back. All this happened after I had cleared suz with my neurologist (epileptologist) to be sure it would not interact with my seizure meds. After doing some research online on my own, I realized that suz "induces" a P450 CYP3A4 enzyme to be more active, and the 3A4 enzyme metabolizes (breaks down) some of my seizure meds, thereby lowering my seizure threshold. Suz is new, and not approved for use for chronic pain, but it had gone through phases 1-3 for acute pain, and apparently this did not show up. I recommend that, if you have seizures, you not only check with your neurologist, but use AI and do your own research to determine if the particular anticonvulsants you're taking are metabolized via 3A4.
This applies not only to those of us on seizure meds, but any meds that are metabolized via 3A4.

My pain doctor mentioned in passing that Suzetrigine interacts with Gabapentin (I have never taken it but I think a lot of people on this site do take it) so that it is great information. I always always do my own research and your experience validates that. I am surprised that a pain doctor would know this and your neurologist did not.

Nice review. I gained much additional information that I found helpful. Even 2 points on the VAS Pain scale can change how I deal with a day. I only treat with opioids when my pain reaches 8. I Suzetrigrine keeps me below 8, then I will have fewer opioid days which is a plus for me as I then will have fewer sleepless nights. As I can not tolerate any NSAIDS (renal toxicity) I need something to fill the void between Acetaminophen and Hydrocodone/Tramadol as those are my choices right now.

Please do NOT treat this as fact but do check it out....My pain doctor told me it could be taken with Tramadol, NSAIDS, and Acetaminophen as an adjunct. He also said that it decreases the efficacy of Gabapentin (I don't take that either but see a previous comment for helpful info regarding this)..This is a novel drug and there is much that is unknown. My pain doctor seemed knowledgeable but who knows? I think those of us who try it are guinea pigs...I do know a went to a party last weekend and I'm planning on going to a family gathering this weekend...it's been awhile since I've been up for fun. I do still take Celebrex and Acetaminophin with the Journavx.

This is what my MD said about Suzetrigine when I asked:
"As with all new Rx medications, this one will be expensive and there will be no generics for years. I see on the news release that it is $15.50 per tablet. Vertex's website says 'JOURNAVX is a prescription medicine used to treat adults with moderate-to-severe short term (acute) pain.' "

I tried this drug. It works. Expensive. My facial pain doctor researched the drug and wrote the prescription for me. I have trigeminal neuralgia from a car accident. I recommend this drug.