I am starting a new discussion about 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.

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

@kdks99

My pain is chronic, as well. I am going to try it when available. After reviewing the clinal trial results I am hopeful that a better designed Phase 3 trial for chronic pain will yield better results but who knows? I will let you know if it works for my chronic pain but I'm a sample size of one. The side effect profile seems to be good so I'm willing to try....but you're right no one knows if it will be helpful for chronic pain. I think it will be covered if prescribed off label but I'll let you know that when I find out.

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@kdks99 I sent the drugs.com article to my doctor and she said to let her know when it is available in Canada, “then we’ll discuss it”. I don’t know of a Canadian drug information site like drugs.com so I don’t know where else to look. 🤷🏼‍♀️

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@cynthiaw

I am not upset, I just don’t believe a drug that’s been tested and PROVEN to cause serious side effects, all while their placebo in the trial had better pain relief, should’ve been posted with that info. You just gave many people hope where there is none. Have you read any other articles about this drug? The link you sent is from the owner/manufacturer; they tend to obscure, or leave out, bad information on their drugs. “As with any new drug we just don’t know.” Yes, we do know because it was tested. Try to research Valtrex again; I’m sure you’ll find better information. If I come across the articles again I’ll post them.

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@cynthiaw - drugs.com is an independent drug information site, and quite reliable, I believe …
https://www.drugs.com/journavx.html

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@rashida

@cynthiaw - drugs.com is an independent drug information site, and quite reliable, I believe …
https://www.drugs.com/journavx.html

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If you believe the drug hasn’t been tested enough just don’t try it.

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Suzetrigine (marketed as Journavx) is currently only FDA-approved to treat moderate to severe acute pain and is not approved for chronic pain, although research is ongoing to investigate its potential use in chronic pain conditions.

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This drug will be valuable for post op pain because it is non addictive. I had high hopes for this drug as I was hoping to get off Gabapentin but at $15.50 a pill twice a day, this will be out of reach for me as a Canadian.

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@joannehart

This drug will be valuable for post op pain because it is non addictive. I had high hopes for this drug as I was hoping to get off Gabapentin but at $15.50 a pill twice a day, this will be out of reach for me as a Canadian.

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@joannehart Inwonder if you could claim the cost on your income tax return …? Of course, the up front financial cost may not be feasible …

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@rashida

@joannehart Inwonder if you could claim the cost on your income tax return …? Of course, the up front financial cost may not be feasible …

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Yes, we can claim this drug on the income tax because it is it is ordered by a doctor. As I am Canadian, the cost is way too much. It is not available in Canada so I would have to get it prescribed by a doctor in the US

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@joannehart

Yes, we can claim this drug on the income tax because it is it is ordered by a doctor. As I am Canadian, the cost is way too much. It is not available in Canada so I would have to get it prescribed by a doctor in the US

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@joannehart I am going to wait till it is approved in Canada.

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@rashida

@joannehart I am going to wait till it is approved in Canada.

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Good idea. It will take years for the cost to go down. I probably won’t see it in my life time

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@joannehart

Good idea. It will take years for the cost to go down. I probably won’t see it in my life time

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@joannehart if it is approved here, hopefully OHIP will cover it. I am 78 and get ODB. If OHIP doesn’t cover it, I guess I will have to do without it. Can’t afford the up front cost.

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