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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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@bettyg81pain I am on Tramadol, Gabapentin, and diclofenac K for pain. Plus, I have an implanted pain pump that has not provided any real relief so far. I have not discontinued any of them. At day three I am not seeing any relief so far, but perhaps it's early in the game.
Here's my update on taking Journavx...after four days I have not the slightest bit of pain relief. So, I am discontinuing the drug and chalking it up to another failed therapy for my pain. Hope there are those who find this new medication helpful.
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1 Reaction@heisenberg34 oh I’m so sorry!
@julbpat Thanks. I’ll just keep soldiering on. One day at a time. God is good…
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2 Reactions@cek I just can’t accept the wheelchair thing yet! Vanity?
@bettyg81pain flew back home yesterday. What in the heck is that construction? I walked miles again on temporary hallways! I think I like the ability to stop for a snack, browse a little - so I don’t want a wheelchair yet. But I have to admit there is true suffering, and repercussions (exhausted and sore today) from doing all that walking with my “bag of stuff” I always need.
I think I would do the wheelchair if a friend or family member was pushing it, but I’m always traveling alone, to VISIT the friend or family member!
@bettyg81pain I keep taking my carbamazepine and Percocet, although a little less Percocet than usual.
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1 Reaction@heisenberg34 I feel like a higher dose would really help me more. My loading dose of 100 mg gave significant relief within an hour. Also it definitely wears off at about 8-10 hours. Maybe when it’s finally approved for chronic neuropathy, there will be different doses.
Remember my story about the painless lidocaine injections in my palm? Here’s something you could try. Do a test pinprick on your palm. Take a “loading dose” of 100 mg (since it’s approved). Wait at least an hour, then do another pinprick test. If you notice ANY difference, then you’ve done your own experiment on whether this drug might help you in the future when the parameters for prescribing open up. I wouldn’t give up yet! It works on peripheral nerves.
I’m a nurse so my brain tends towards clinical solutions!
@julbpat I do understand the issue of vanity, however, travel is challenging in my case due to the state of my neuropathy. Walking is fairly easy for about 100' and then increasingly intolerable. The Boston-LA trip involved changing planes with a tight window between flights. I knew it would be quite difficult to make the connection on time without assistance. I do believe the connecting flight would have been excruciating if I had walked the airport instead of using the assistance. I'm in my 70's and vanity was comfortably suppressed.
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1 Reaction@julbpat Thanks. When you say that you got significant relief, what do you mean? Can you compare the before and after pain(1-10)? Even if this had worked for me, it is unlikely that I could afford the current pricing of $800/month. Keep on keeping on.