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.

moorethrpy | @moorethrpy | Jun 19 10:14am

Sometimes drugs can be used off label. Neuropathy pain is so erractic for many of us.

julbpat | @julbpat | Jun 19 11:47am

In reply to @moorethrpy "Sometimes drugs can be used off label. Neuropathy pain is so erractic for many of us." + (show)

Since it is so new, my doctors are not comfortable with prescribing it off-label. They don’t have enough data to do that just yet. But maybe soon!

debbiehirsch | @debbiehirsch | Jun 19 3:08pm

I asked my neurologist for this med and he said that it’s only for acute pain and not chronic. I hope it comes out soon for chronic pain!!

randymor | @randymor | Jun 22 9:54am

Please let me know when you get more info about the approval of this.I have non diabetic neuropathy and have burning pain in my feet calves and legs

richcinvt | @richcinvt | Jun 23 5:03pm

Hi all,

My neurologist wrote me a script for Journavx with taking one dose per day which I later found
required two doses per day. I took the one dose for 2 weeks with no improvement. The monthy
script cost was nearly $1,000.00 x's 12 months. I have one week remaining at 2 doses and eventually will give it another try!

julbpat | @julbpat | Jun 23 6:06pm

I’m amazed and happy that your neurologist prescribed it for chronic pain! Hopefully my physicians will eventually feel comfortable with this. I know it’s just a matter of time before it’s prescribed for chronic pain.
It worked so immediately and well for me that this confirms my understanding that we all have different types of nerve damage. Mine is idiopathic small fiber. Pain but no numbness. Journavx did studies with diabetic neuropathy and it didn’t help their pain.
I’m inspired now to ask for more. Tegretol works really well for my neuropathy, but we’ve learned that large enough doses cause disabling side effects for me. My toes burn constantly, and I’ve been wearing socks with my sandals all summer! Years of constant pain - if Journavx helps me, I need to be taking it.

sebringsully | @sebringsully | Jun 24 6:13am

I found this meds to be complete garbage
Paid $$$$ for it DID NOTHING

magnum52 | @magnum52 | Jun 24 1:21pm

In reply to @richcinvt "Hi all, My neurologist wrote me a script for Journavx with taking one dose per day..." + (show)

I tried Journavx in February 2025. I have a HUMANA MEDICARE ADVANTAGE PLAN. Humana did not cover it, but I requested them to consider putting it on their formulary and they did at Tier 4 which is VERY EXPENSIVE. The drug is not indicated by the FDA for chronic pain, just acute pain. The dose is twice daily after a loading dose. Due to the expense, I only took 1 tablet daily but sometimes I took it twice daily. It appears to have a very weak affect on pain so I no longer take it. The expense is just too much as well.

I have followed this drug the last 3 years hoping it might be an answer to the burning in my feet due to idiopathic small fiber neuropathy. I retired from a major international pharmaceutical company, and have been very involved in research for new neuropathy treatments. Unfortunately, all the current drugs just treat symptoms and do not address the root cause. But, one drug that I have followed for years is called ENGENSIS from Helixmith Pharmaceuticals in South Korea. It actually can reverse nerve damage but the company has not put out an update on the drug for over a year so I don’t know if it’s still viable or not, and they will not answer my email inquiries. The drug Pirenzipine from WinSanTor seems to be dead. I think they just ran out of money. So, in conclusion, other than ENGENSIS, I don’t think there is nothing in research that really makes a difference in the disease.

richcinvt | @richcinvt | Jun 24 2:23pm

Thank you for your update! I'll keep Engensis on my radar.

julbpat | @julbpat | Jun 24 2:33pm

Very helpful! You are a great resource! And now that’s 3 people here who were able to get a prescription even with chronic pain. So I messaged my neurologist today to ask for another trial.

As I said, my pain subsided significantly within an hour of the loading dose. I was able to travel, and walk on the beach, without that overall tender, burning feeling I live with - especially my feet. Unexpectedly, my digestive discomfort disappeared. I even ate Mexican food in the evening, and didn’t spend hours bloated, burping and having reflux.
I am also on Tegretol, which can metabolize Journavx and decrease its impact. I can just imagine that I would improve even more without the Tegretol.
I had zero side effects. And I took my last dose the morning after I returned. The pain and digestive issues came roaring back.
Was it all because I was on vacation and relaxed? No. The impact started the night before, while I was still moving around packing. I handled the airport fine. I didn’t want to cry out in pain if I bumped against something. Being squished in my seat didn’t cause pressure pain.
For whatever reason, this medicine worked for me. I’m sorry it’s not a magic bullet for my fellow sufferers.