Suzetrigine - a novel drug for pain

Posted by kdks99 @kdks99, Jan 26 11:32am

ok...So here's what I know and what I think is true. This drug was FDA fast tracked. The results of the phase 3 clinical trial for acute pain were very good. It was on track to be approved on 1/30/25 but due to an executive order regarding FDA communications it is not clear if the FDA will be allowed to release the approval or not.
https://www.goodrx.com/conditions/pain/opioid-alternatives
Vertex completed a phase 2 study and the results were inconclusive due to poor study design. After reviewing the results it is my opinion if a better designed phase 3 is approved the results will be similar to the study for acute pain. This is the first new non-opioid pain medicine in 20 years.

Once it is approved I plan on insisting my doctor writes an off label script so I can try it even though my pain, like your's is chronic. The side effect profile is excellent..i.e. there were actually MORE side effects in the placebo arm of the study... doesn't get better than that.

That being said, there is no information on the side effects for chronic pain, which would require long term use but after reviewing the research i will take a chance.

I am not sure about how the medicare coverage will work, but once it is approved I will look into it and share with you here. I think they may have to pay for it if your doctor writes a script off label or not.
https://www.nopainpact.com/pdf/Nopain_Act_Guide_Implementing.pdf
This has the potential for being a game changer so I think we need to educate our doctors and do
our own research.

Please let me know if I can provide links to more information that might help you.

Like Helpful Hug

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Has anyone taken Journavyx for neuropathic pain? I am on Tramadol, Gabapentin, and Baclofen, and they barely touch my pain.

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@heisenberg34

Has anyone taken Journavyx for neuropathic pain? I am on Tramadol, Gabapentin, and Baclofen, and they barely touch my pain.

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I think it may not be a good idea to take with Gabapentin. There is so little known for sure that I don't think anyone knows but my pain doc suggested that might be the case. I believe it is an adjunct to other drugs, not a stand alone. I have lumbar radiculopathy. It is helping but took about a month to really notice improvement. I take with Tylenol and Celebrex.

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@kdks99

I think it may not be a good idea to take with Gabapentin. There is so little known for sure that I don't think anyone knows but my pain doc suggested that might be the case. I believe it is an adjunct to other drugs, not a stand alone. I have lumbar radiculopathy. It is helping but took about a month to really notice improvement. I take with Tylenol and Celebrex.

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Thanks. What would you say your pain level was before and after adding it?
Did you find an affordable means of paying for the drug after the initial month?
Hope your improvement continues.

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Not affordable...I think if your insurance does not cover it you'll be in better shape. I don't like the numerical thing butI'll try. Before Jounavx 6-7....after around 4.....Enough of an improvement that I cancelled an appointment with a neurosurgeon at HSS.....I just hope it keeps working over time...no on knows.

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@kdks99

Not affordable...I think if your insurance does not cover it you'll be in better shape. I don't like the numerical thing butI'll try. Before Jounavx 6-7....after around 4.....Enough of an improvement that I cancelled an appointment with a neurosurgeon at HSS.....I just hope it keeps working over time...no on knows.

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Were you on any other meds before taking Journavyx? Like tramadol or oxycodone?

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@kdks99

I think it's working for me, as well. If you're comfortable sharing, did it work immediately? I think it helped me over the period of a month.

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It worked within an hour. I only took this drug twice. It make my pain tolerable. I hope participants of the site give this drug a chance. I do not take this drug daily only when trigeminal neuralgia becomes unbearable.

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@heisenberg34

Were you on any other meds before taking Journavyx? Like tramadol or oxycodone?

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Just Celebrex and Tylenol arthritis...My pain doc said it could be taken with Tramadol but it's worked well as an adjunct to the Celebrex and Tylenol so I don't need it at this time. My impression...it will work to improve the efficacy of whatever you're taking...It will not replace current meds.

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@kdks99

Just Celebrex and Tylenol arthritis...My pain doc said it could be taken with Tramadol but it's worked well as an adjunct to the Celebrex and Tylenol so I don't need it at this time. My impression...it will work to improve the efficacy of whatever you're taking...It will not replace current meds.

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Thanks. Always on the lookout for something to help with the severe chronic pain. Have a blessed Easter!

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@johnbishop

Here are some references on the drug...

-- Pharmacology and Mechanism of Action of Suzetrigine, a Potent and Selective NaV1.8 Pain Signal Inhibitor for the Treatment of Moderate to Severe Pain: https://link.springer.com/article/10.1007/s40122-024-00697-0
-- Fresh from the biotech pipeline: FDA approvals settle in 2024, but what next?:
https://www.nature.com/articles/s41587-025-02555-6
-- Global first-in-class drugs approved in 2023-2024: Breakthroughs and insights:
https://www.cell.com/the-innovation/fulltext/S2666-6758(25)00004-9

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Do you know if there’s a protocol for transitioning from opioids to Journavx? I am on Belbuca with Oxycodone for breakthrough pain. Can these drugs be taken together while titrating off the opioids?

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@mmalone1804

Do you know if there’s a protocol for transitioning from opioids to Journavx? I am on Belbuca with Oxycodone for breakthrough pain. Can these drugs be taken together while titrating off the opioids?

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I think that is a question that needs to be discussed with your doctor. You might scan through the comments by other members who have shared experience with Journavx. Here's a search link that lists the comments by members - https://connect.mayoclinic.org/search/comments/?search=Journavx

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