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

@heisenberg34 search under my name and you’ll see what happened with a recent hand procedure I had.

@julbpat You are such an amazing resource! My pain mgmt Dr gave me the 14 day course after I was having horrific nerve pain after knee replacement surgery. Between this and the gabapentin, I was able to sleep for the first time in weeks! It has been a God send!

I see that this only for "acute" pain. I've had chronic migraines for 30+ years. I would GLADLY give up my normal pain med if this could be used instead. In your research, have you seen anyone mention this being used for chronic migraine pain?

God bless you and thanks!

@catcat3201 you know, I am an RN, and specialist in lactation who had to give up my career because of this horrible illness of Small Fiber Neuropathy. I helped people every day in my work. I'm happy to share, and hopefully help people again!
I have not read anything about migraines, but heck, who knows! My PCP has jumped the FDA hurdles for me by being willing to prescribe it for my chronic pain when no one else would. In fact, I just used the amazing $30 coupon for a second time, and refilled my prescription. Maybe your migraine doctor will be willing to let you try it, if you promise to report back to him.
Vertex Pharmaceuticals probably won't be able to help you, because they are only approved for trials with acute pain (which they've completed) and now diabetic neuropathy (trials in progress).Not that they wouldn't WANT to help you, but their hands are tied by the FDA.
I wonder how the scientists and researchers feel about spending so many years creating this medication to treat pain, only to find that patients can't have it, either by FDA restrictions or the exorbitant price. How frustrated they must be.
I say it never hurts to ask. Tell your migraine doctor you will explore it with him, and agree to any labwork he orders to watch for untoward side effects (which most likely won't occur).
I have found that the effect is highest within the first hours of a dose. I took at at 8 am today. I had a steroid injection in my hand at 2 pm, and the magic wasn't as strong as the hand injections in September, when I had morning appointments. So I know now to take it just a few hours before I really need the best relief. I can definitely feel it wearing off before the 12 hour mark. A higher dose more often would be ideal . We'll get there someday!

A positive note for those discouraged about Journavx (suzetregine) not working:
I remember in the 1970's when I was first given prescription naproxen (Anaprox) for menstrual cramps. Before that we only had aspirin or Tylenol. The relief was life-changing. Fast forward, uh... 50 years, and Advil is available over the counter, along with several other strengths of prescriptions. From 220 mg twice a day, up to 1500 mg for some situations! The same with Ibuprofen. Just a normal strength used to require a prescription. Now you can by it over-the -counter and tailor your dose, even quadruple it.
We are only at the beginning of the Journavx experience. The current dose for acute pain is 100 mg loading dose, followed by 50 mg every 12 hours. I know this is not a high enough dose for me. I know I will reach the next level of relief when I can take a higher dose more often.
So in the future a Journavx dose for a sprained ankle might be one thing, and a dose for chronic pain related to neuropathy might be much higher.
Some day it won't be "wrong" to take it daily for chronic neuropathy. It will seem as normal as taking seizure medicine daily for neuropathy, which we do now. Or opioids.
The Journavx literature follows the medical description of acute pain as 3 months or less. Meaning, right now it is approved for a 3 month or less time span.
When it is approved for chronic pain, then will start to see various doses and strengths available.
So if you didn't notice much relief at 50 mg, just wait! Some day will have 200mg, or extended release! Hang in there!
Right now I am taking 50 mg twice a day indefinitely, thanks to my wonderful PCP, and the Vertex Pharmaceuticals coupon. And tenacity on my part, I might add. I told my PT I wouldn't be needing the $85 dry needling sessions for the near future. I always go every 2 weeks. Don't need it now. My hands aren't hurting while I type this. I plan to try taking a walk for exercise tomorrow! It's just crazy to experience this.
We can impatiently wait for the future of Journavx. It's amazing to finally feel optimism.

Am going to see Dr tomorrow but feel hopeless as my vitamin B12 level is normal and a touch high but Dr said on phone ok but I have neuropathy everywhere for 2 weeks and am 😟 as I
Need relief but afraid of gabapentin but wondering if an MRI would be helpful but am confused right now as I can’t stand pain needle like

@rubonimo I was scrolling through looking at Journavx. I had seen you are on a max dose of Pregablin, is it 150 mg twice a day (300 mg)? Did you end up trying Journavx? I did and had posted that it did not work for me. I am also on max dose of pregabalin and it has had minimal impact on my pain.

I’ll throw in an update about Journavx. Sadly the $30 coupon is only good for two months. Trying the new 2026 coupon didn’t work -I have used my 2 months, period. Understandable since it’s only approved for acute pain. So back to $945 on a credit card for pain relief. That stinks. But I can’t give up this pain relief, now that I have experienced it. I am NOT pain free, but the overall burning is hugely diminished. That leads to other improvements in my energy and activity level.
I plan to call Vertex Pharmaceuticals today to chat about this situation. They do have ongoing clinical trials regarding diabetic neuropathy, but my diagnosis is idiopathic.

@julbpat I can imagine how wonderful it must be to have your pain reduced, even if it is only marginal. Those without severe, chronic pain might find it hard to understand why anyone would spend almost a thousand dollars a month for a med. I would spend whatever I could if it would give me that same relief. Unfortunately, it did not help me at all. I hope you continue to get relief from this drug. Perhaps the price will come down eventually. Be blessed.

@julbpat I too have been helped by Journavx; I take 2 in the AM & I can do my regular life; without it I’m never sure if I can walk 4 houses down or not. I got 30 pills for $30 with the coupon; then it took 3 tries to get approval for 16 more pills for $112. I’m saving them for my next vacation; so, I can enjoy myself. Because it’s for acute pain only, I can’t get anymore. I will pay the $1,000 for more pills!

@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.