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Journavx (suzetrigine) new non-opioid medication for acute pain

Posted by julbpat @julbpat, Jun 18, 2025

I heard about this new medication (approved in January) here on Mayo Connect. In May, my PCP was willing to give me a one week prescription. None of my physicians - pain doctor, neurologist, primary care - were familiar with it. It is only approved for acute pain. As I explained to my really wonderful PCP, those of us with chronic pain can also have acute pain.
I was preparing for a beach vacation, my first travel in a year, and it involved hours of airport time. Then strolling on the beach.
I took the loading dose (100 mg) the night before. Guys, within an hour the burning in my feet had reduced by 80-90%. As I took the dose of 50 mg every 12 hours, my pain stayed at least 75% reduced. If I had a larger dose, or could take it more often, I swear I would hear angels singing.
I had zero side effects. It was a wonderful week. After my last dose, the pain came back full force.
The company has done trials for chronic pain with diabetic neuropathy patients, with poor results. I have idiopathic small fiber neuropathy. Journavx works on peripheral nerves.
When this medication is finally approved for chronic pain, many of us will finally get relief, with no awful side effects.
I did notify the company about my experience, and told them to put me first in line for the next trials. I’ve also shared this with all my doctors, including my hand surgeon. Hey, I’m having another hand surgery in a few months! Maybe I can get more then! Acute pain!

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sue4 | @sue4 | Jan 7 10:12pm
In reply to @julbpat "@sue4 the coupon is good for 60 pills, which is a one month supply of two..." + (show)
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@sue4 the coupon is good for 60 pills, which is a one month supply of two per day, so you are owed more! I never thought of taking them both at the same time. That 100 mg dose certainly would help, but then I would have to wait 24 hours for more! A dilemma either way.
I had a very satisfying chat with the Vertex Pharmaceuticals support line. It’s called Journavx Plus You Patient Support. 1-833-589-7246. 8am-11pm ET. You can also submit your information online. You have a good story to share - it helps you have a better life, and you’re struggling to get it. They need and want to hear this.
My first hurdle was getting one of my doctors to prescribe it for ongoing use. My PCP and I have an understanding that I will take it as prescribed (100 mg/day) and he can do any lab work he needs to check for possible complications (which we’re not expecting). My second hurdle is finances. I’m telling everyone that will listen that I have spent $3,250.59 so far on a couple of credit cards. And I won’t stop, because when I feel that pain returning, I can’t stand the thought of going back to that. I can’t believe I’m going in debt for a safe and effective non-opioid pain solution.

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@julbpat The loading dose as stated in the literature is 2 pills to start; then, at night I take 1/2 a 10 mg gummie; that way I can sleep. My pain doc won’t prescribe more; he’s “by the book” re the acute pain issue; but, I will ask my IM doc if she will. I will call the patient support # tomorrow & tell my story. Thanks. I totally understand your desire to have a pain free life - it’s priceless!

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julbpat | @julbpat | Jan 7 11:10pm

My pain doctor and neurologist would not prescribe it. FYI, loading dose means the very first dose you take at the beginning of a new medication to load your system. So you take 2 for your first dose, then one twice a day after that. (I am an RN). But I think your routine is pretty good. I know that 50 mg isn’t enough for me, and it doesn’t last 12 hours. The actual dose they eventually settle on for our neuropathy pain will be higher than 50 mg (in my opinion).

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heisenberg34 | @heisenberg34 | Jan 8 8:49am

I don't blame those of you complaining about this drug that has given you your life back one bit. I tried it for my severe, chronic lower back pain. I tried my limited 30 day supply in several iteration... 50 mg/2x daily; 2 pills at a time. no good. No effect. I can attest to the fact that chronic pain can be debilitating, much more so than acute pain. Acute pain will usually improve over time and you will feel better. Not so with chronic pain. It can be there 24/7, the burning, tingling driving you crazy. The drug company needs to hurry up on their testing so that people who experience this kind of pain can have hope that their drug won't be ripped from their hopes after just 30 or 60 days, unless they are willing to go bankrupt. My thoughts and prayers are with you all.

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