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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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A portion of my retirement benefits is health insurance. it is coupled with medicare. The insurance is with Harvard-Pilgrim. My doctor and the insurance company went back and forth for a bit before the approval.
Exciting update about price! Journavx has a $30 discount card on their website. I think I saw it before, but ignored it because you can’t use coupons on Medicare. Today I went to Publix Pharmacy with that discount, because the fine print says “if your government instance isn’t covering the Journavx, use this discount card”.
Well, Publix told me they don’t honor that because they have not gotten reimbursed from Journavx when they did. The pharmacist sent me to CVS. A few faxes and phone calls between pharmacists, and I got my 30 day prescription filled for $30!!! So that solves one of my problems - the cost.
Now, about the almost $1000 I paid Publix for the first 30 day prescription. I have to accept that the money is gone. I never tried to use the discount card before today, because I didn’t know I could. At this stage in my chronic pain journey, I have to shrug off things like that. I’m just grateful for my bottle of 60 pills for $30!
What dr will give me a script for this new medication? I have nerve pain in my feet and legs
Do you have a neurologist? You can ask them. Or your primary doctor.
@debbiehirsch, my PCP told me that many pain medications, including opioids, are classified as for acute pain. It’s whether our doctors are willing to write a prescription knowing we have chronic pain vs acute
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2 ReactionsI never thought about that! I’m still hoping and begging for more prescriptions. It reminds of when I first started with horrible neuropathy pain, and no one knew what it was. Begging for pain relief!
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1 ReactionAnother Journavx update:
I was able to get a second prescription for 30 days. The first one cost me about $1000. This time I paid more attention to the coupon on the Journavx website. It is for people on Medicare or Medicare who have been denied coverage for this. I am on Medicare. Publix (my usual pharmacy) does not honor this coupon, because the Journavx company never reimbursed them. This is probably why I didn’t know about it, and spent $1000. They sent me to CVS. I got 60 pills for $30!
Like many SFN sufferers, I have problems with my hands. I ended up with a Dupytren’s Contracture as a complication of trigger finger surgery. One treatment for this is a Xiaflex injection (that’s another story). What I want to share is the impact of Journavx on this painful procedure. The hand surgeon began with Lidocaine injections in my palm. Any of you who have had this know how painful these are. I FELT ONLY A TINY PINPRICK. I did not feel the injection. When he injected the Xiaflex and warned me of pain and pressure, I felt NOTHING. My hand was not numb when I went in. My palm has full sensitivity. But I did not feel even the Lidocaine injections. Guys, this is a miracle, and somehow I need a steady supply! Tell your doctors!
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2 Reactions@josie60 I've been taking gabapentin for 10 years for my neuropathy.. now that it's come back 2x and I'm back on iv chemo.. it's getting a bit worse..
It must have been an amazing feeling to have your pain reduced by so much. Just an FYI, on the 1-10 pain scale, what would you say your pain level was before and after? Keep on keeping on. Let's pray that this med will soon be approved for chronic pain and the price will become affordable.
@heisenberg34 hmm the pain scale ... My daily pain without any pain medication would be a 4-5. When taking Journavx twice a day, and NOT traveling and doing lots of walking - say just a normal week at home - it's a 1-2. When it's time for the next dose, the burning and all-over discomfort starts coming back. I could use it every 8 hours or more often, or a larger dose.