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

Posted by julbpat @julbpat, Jun 18 7:20am

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!

Interested in more discussions like this? Go to the Neuropathy Support Group.

Profile picture for julbpat @julbpat

Wow. That’s great. Question: does your PCP plan to continue prescribing it for you? I’m not sure mine will, after my first month is over, since he doesn’t have any reference data for continual use. The Journavx website does mention “3 months” as acute pain, which sounds like a sneaky way to approve a 3 month prescription. But I’m afraid I won’t be able to get more, after I get used to the relief.
I’m filling mine one week at a time, since insurance won’t cover it for off-label use. That’s a whole other topic. I am in talks with Aetna. So one month was $933 with discount coupons. I’m on Medicare, so can’t normally use discounts, but since I’m paying out of pocket, I can. Anyway, I’m basically hoarding it right now. I’m going on a big trip and want to take it twice a day during the trip, and have some left over for recovering when I get home. After that, I don’t know who will prescribe more for me.
So the pain relief is here, sitting in a bottle, but I’m not taking it!

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Remember as you look at your upcoming drug plan for 2026 with Aetna, they may change their formulary. This would be a good time time- Oct- Dec7 to shop your drug plan- if you’re able.

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I just heard about this new medication TODAY! I was at my acupuncture appointment going over my meds and my issues. Nothing I currently take really helps with nerve pain (which is constant) so I am excited and hopeful.

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Profile picture for frenchie218 @frenchie218

I just heard about this new medication TODAY! I was at my acupuncture appointment going over my meds and my issues. Nothing I currently take really helps with nerve pain (which is constant) so I am excited and hopeful.

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Did your dr give you a script for this medication?

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Profile picture for debbiehirsch @debbiehirsch

Did your dr give you a script for this medication?

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Two of my doctors, Pain Specialist and Neurologist, weren’t comfortable prescribing it off-label. My primary doctor has prescribed it for me in moderation with the understanding that he will not give me an endless supply until more is known about chronic use. Which makes sense, because it is not approved for chronic use. Insurance will not cover it for neuropathy pain, and it’s very, very expensive. I spent about $1000 for 30 days worth, buying it in weekly amounts.

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I have been taking this medication for approximately 45 days. I can not honestly report that it is a wonder drug. There are some days the tingling, burning, numbness, and pain in my feet seem better, but I think it is more wishful thinking. My neurologist did prescribe this for long term use. The pharmacist was reluctant to fill it and did check with the manufacturer ~ they had doubts about it's long term use. It is not a magical elixir in my opinion.

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I wish the company could/would do some research on why it works for some of us. It obviously would give some clues about the type of neuropathic pain we have, and maybe even why. But if I contact the company, the will want info about my prescriber, and I’m not going to share his name, in case off-label use is being monitored.
I’m sorry it isn’t working great for you. I will say, I kept taking my Percocet while on it daily, but not as much. My muscles still ached. As I said initially, I would need a larger or more frequent dose.
Did you have to pay for it?

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Profile picture for debbiehirsch @debbiehirsch

Did your dr give you a script for this medication?

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Not yet, I called today but she’s out of the office until Monday. Any relief would be a godsend! I will post whatever the outcome is, hoping to hear back on Monday.

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My sig other also has small fiber neuropathy and it works for him also. But he cannot get enough of it, as you know so he keeps the med and only takes one when it gets really bad. Even one pill will help him. There is a 2 week Journavax coupon from the manufacturer to get it for $30. He got coupon from his pain clinic his provider otherwise it is very expensive.

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Profile picture for julbpat @julbpat

I wish the company could/would do some research on why it works for some of us. It obviously would give some clues about the type of neuropathic pain we have, and maybe even why. But if I contact the company, the will want info about my prescriber, and I’m not going to share his name, in case off-label use is being monitored.
I’m sorry it isn’t working great for you. I will say, I kept taking my Percocet while on it daily, but not as much. My muscles still ached. As I said initially, I would need a larger or more frequent dose.
Did you have to pay for it?

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My insurance covered the cost except for my $45 co-pay. It would have cost $1,000 without coverage for a presumed 30 day supply. I will finish the remainder of the prescription and decide then if it is worth continuing. So far doing so is a no.

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Profile picture for cek @cek

My insurance covered the cost except for my $45 co-pay. It would have cost $1,000 without coverage for a presumed 30 day supply. I will finish the remainder of the prescription and decide then if it is worth continuing. So far doing so is a no.

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Which insurance carrier do you have?

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