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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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@julbpat Thanks for your response. I remember being at a 4-5 in pain. It was no fun. Now, with a daily average of an 8, even with meds and a pain pump, I would love to be able to try Journavx. Even if it meant paying full fare for the initial Rx. I would think that the price has to come down to make it more available to more patients. We can pray.
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1 ReactionI asked my pain doctor, neurologist and primary care doctor. My PCP said yes, and has given me one week initially, then two more prescriptions for a full month each. I’m pretty sure he won’t continue to prescribe it for me continuously, so I’m asking all the others again. I have a cut and paste document listing experiences others have had. I’m up to date on the latest research. I’m just going to keep asking!
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1 ReactionI keep forgetting this part: my neuropathy pain medication is carbamazepine (Tegretol). There is a warning on the Journavx subscriber page that says Tegretol is one of the medications that can reduce the efficacy of Journavx, so the two should not be taken together. My PCP and I discussed this, and agreed that I had been informed of the possibility that my pain management with Journavx might be less than expected with the Tegretol in use.
I have acute pain with peripheral neuropathy that has gotten worse over time to the point I can feel it over my entire body. I am on the highest dose of Pregabalin with no relief. Where can I find clinical trials for Journavix??
That would be classified as chronic pain. You can find out more about any clinical trials by digging through the Journavx website (I can’t remember the name of the pharmaceutical company). But it seems they have only been given permission to do clinical trials for diabetic neuropathy at the present.
You could contact the company directly and see what they say. Doesn’t hurt to ask! Just keep searching on Google until you find a way to contact them.
With this neuropathy condition, you have to do a lot of you own research!
@julbpat Thanks for the feedback!