Journavx (suzetrigine) new non-opioid medication for acute pain
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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I was given a sample of Journvax. It does seem to help my spine pain in combination wirh tramadol. My pharmacy did not have it in stock. Dr gave me coupon that may help with the cost. Anyone have any exoerience with this drug.
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2 ReactionsThis drug did not help me. For those it has helped, I would like to think that the price should come down. But, it won't be any time soon. Unless it becomes financially sound to take on a generic partner.
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2 ReactionsI have taken Journavx for post procedure pain and it works pretty well. It is extremely expensive so I definitely utilized the manufacturer’s coupon. My insurance company paid once I had reached my out of pocket maximum so that’s one way to get it covered. I have to take Norco to manage daily pain; I also have Small Fiber Neuropathy so anything painful is amplified for me. What I have done is alternate weeks of opioids with weeks of Journavx, it helps me ensure I’m building too much of a tolerance. I do hope Journavx becomes more accessible and affordable for chronic pain patients. Good luck!
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3 ReactionsThis is really off label but through self experimentation I have found that if I take 2 50mg 1x a day it really helps One did not help. It lasts about 8 hours. Many scripts are being written for chronic pain as patients and doctors try to avoid opioids. My pain doctor said a lot of her patients have found Journvax helpful, A lot is unknown about this novel med but I understand how it works. I'm hoping more research is funded. I am very lucky. My doctor was able to get my insurance to cover it for a year. https://www.epicresearch.org/articles/suzetrigine-prescribed-often-for-chronic-pain-despite-its-acute-pain-label/
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1 ReactionHello @jeaniem,
I combined your discussion with an existing discussion titled:
"Journavx (suzetrigine) new non-opioid medication for acute pain"
- https://connect.mayoclinic.org/discussion/journavx-new-non-opioid-medication-for-acute-pain/
Here, you can read through many members' experiences and questions about Journavax.
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4 ReactionsI took Journavx after elbow surgery and did not feel any pain. It's a wonderful non opioid drug, but you cannot take it more than two or three weeks. Since it's fairly new, many doctors are not familiar with it. If I ever have to have surgery for anything in the future, I will certainly request Journavx.
Hi. My PCP gives me a regular daily prescription for this, and I’ve been taking 50mg (the only dose available) twice a day since November. It helps with my neuropathy pain - the burning, twitching, restless legs. It only helps, does not eliminate. I would need a higher dose or more frequently to truly control all the neuropathy issues. I feel like the day will come when tailored doses are available.
I paid $950 several months. Then the copay went down for a few months. Now, on Medicare, it is zero. His office submitted the PA several times and somehow it finally got approved. I’m sure I’ll have to go through all that again at one year.
More and more doctors here are prescribing it for chronic neuropathy pain. Our day will come when it is approved!
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3 ReactionsGoing to clinic tomorrow- why are the doctors hesitant to prescribe this for long time sufferers of idiopathic neuropathy?
Maybe because it's newly approved by the so-called FDA. I know some of my doctors wait for peer reviewed trial results to be published before feeling comfortable writing prescriptions fir new drugs. Do you have any spinal degeneration? I went for 35 years being told my neuropathy was idiopathic (unknown cause) before someone realized it was caused by my degenerative disk disease issues.
@patriciaschulz1950 the FDA will not allow the pharmaceutical company to do clinical trials for neuropathy. They allowed trials for diabetic neuropathy, and those are in progress now. My doctor was willing to prescribe it “off label”. But only my PCP. My neurologist, rheumatologist and pain doctor are waiting for it to be approved for chronic use.
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