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!

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Hello,
My husband suffers from non stop nerve pain in his head. It feel like the top of his head is on fire and someone is stabbing him at the top and base of his skull, along with a chronic csf leak. He lives at a 7-9 pain in his head, body too but that’s about a 5-6.
I begged for anything new to help him, thinking the neurologist dismissed me feeling unheard as we always do.
To my surprise he came back in and offered Jouvnax.
On within 30 min the 9 pain came down to a 6, by the next day a 4, then to he said he did not even notice the pain. (We had the grandkids come over so he could be functional with them) As you know it’s scary when it’s over.
I just started crying as that is the first time his head has not hurt like that in 10 years. He feels like he is going crazy from the pain.
Just got a 30 day supply from our pain doctor. (Not Mayo) said I feel like he has the right to try. As his option to say in this world is getting harder for him to handle as time goes on with the pain,
I was so happy to see it helped someone else too.
I am going to reach out to the company for a chronic pain trial option as well.
Here it to hope. Hope it lasts.

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Profile picture for nannahhl @nannahhl

Hello,
My husband suffers from non stop nerve pain in his head. It feel like the top of his head is on fire and someone is stabbing him at the top and base of his skull, along with a chronic csf leak. He lives at a 7-9 pain in his head, body too but that’s about a 5-6.
I begged for anything new to help him, thinking the neurologist dismissed me feeling unheard as we always do.
To my surprise he came back in and offered Jouvnax.
On within 30 min the 9 pain came down to a 6, by the next day a 4, then to he said he did not even notice the pain. (We had the grandkids come over so he could be functional with them) As you know it’s scary when it’s over.
I just started crying as that is the first time his head has not hurt like that in 10 years. He feels like he is going crazy from the pain.
Just got a 30 day supply from our pain doctor. (Not Mayo) said I feel like he has the right to try. As his option to say in this world is getting harder for him to handle as time goes on with the pain,
I was so happy to see it helped someone else too.
I am going to reach out to the company for a chronic pain trial option as well.
Here it to hope. Hope it lasts.

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This is wonderful. I am telling my neurologist about these experiences, both positive and negative. Waiting on a response from him.

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I recently had a Pain Management Doctor prescribe Journavx (suzetrigine). I had heard of this recently approved drug several months ago but cost wise it looked very expensive. I had seen cost of $30 a dose. I was surprised when my Medicare Advantage plan paid for 30 50 mg tablets, and my copay was very reasonable. I had high hopes and expectations for this drug. Unfortunately, after 2 weeks, I did not see any benefit. It is supposed to be used for acute pain, not chronic. I thought I could maybe use it for break through pain because there are no interactions with other medications I am taking. It did not help with this either.

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Profile picture for dstone501957 @dstone501957

I recently had a Pain Management Doctor prescribe Journavx (suzetrigine). I had heard of this recently approved drug several months ago but cost wise it looked very expensive. I had seen cost of $30 a dose. I was surprised when my Medicare Advantage plan paid for 30 50 mg tablets, and my copay was very reasonable. I had high hopes and expectations for this drug. Unfortunately, after 2 weeks, I did not see any benefit. It is supposed to be used for acute pain, not chronic. I thought I could maybe use it for break through pain because there are no interactions with other medications I am taking. It did not help with this either.

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I have asked my Dr. to look at this drug for my pain from PN.
I am taking some Tramadol 1/2 dose twice a day. Seems to help.

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Why can’t your doctor continue with the prescription?

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Profile picture for julbpat @julbpat

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.

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My pain management doctor prescribed it for two doses a day which worked but my insurance will only pay for 30 pills a month which once a day did not help.

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Profile picture for marialyce @marialyce

My pain management doctor prescribed it for two doses a day which worked but my insurance will only pay for 30 pills a month which once a day did not help.

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Time for the dreaded phone call to the insurance company. Make sure you have current Journavx data in hand. The only recommended dose is 50 mg twice a day. Seems they would have to cover the FDA approved dose, not just make up their own coverage, especially if the doctor ordered twice a day.
You won’t know until you try!
Glad your doctor prescribed it for you.

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Profile picture for marialyce @marialyce

Why can’t your doctor continue with the prescription?

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Great question. I’m going to ask all my doctors again, since it’s now obvious many other doctors are prescribing it for chronic pain. I guess my doctors were just following the rules!

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Here is what Wikipedia has to say about Engensis.
To me it is encouraging that anything can promote nerve regrowth!
https://en.wikipedia.org/wiki/Helixmith#Engensis

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Profile picture for julbpat @julbpat

Time for the dreaded phone call to the insurance company. Make sure you have current Journavx data in hand. The only recommended dose is 50 mg twice a day. Seems they would have to cover the FDA approved dose, not just make up their own coverage, especially if the doctor ordered twice a day.
You won’t know until you try!
Glad your doctor prescribed it for you.

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If you go to the journavax web site you’ll see that the loading dose is 100 mg but after that is 50 mg once a day. My doctor is prescribing it above the manufacturer’s recommended daily and that’s the reason why my insurance won’t cover it. I’m not quite sure where you got your information from but it is incorrect. Check out the Journavax web site

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