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.

szeszko1940 | @szeszko1940 | Mar 4 9:53am

In reply to @linda6101 "Keep me posted if it works." + (show)

my pharmacist said I would have to go to a special pharmacy for this

kdks99 | @kdks99 | Mar 4 10:52am

In reply to @szeszko1940 "my pharmacist said I would have to go to a special pharmacy for this" + (show)

I don't know for sure but when I called Vertex customer service they said it will be on pharmacy shelves in March. You might want to give them a call. Real people answer and they are helpful.

szeszko1940 | @szeszko1940 | Mar 4 2:59pm

its March==what is Vertex--the supplier

kdks99 | @kdks99 | Mar 5 7:18am

In reply to @szeszko1940 "its March==what is Vertex--the supplier" + (show)

Vertex is the pharmaceutical company that developed journavx. You can find their customer service number online along with other information or go back through the conversation on this stream...lots of useful stuff. They didn't say when in March. Just sometime in March.

szeszko1940 | @szeszko1940 | Mar 5 11:35am

In reply to @kdks99 "Vertex is the pharmaceutical company that developed journavx. You can find their customer service number online..." + (show)

keep me posted--I see pain management the end of the month

catheem | @catheem | Mar 5 1:40pm

I live in California (South Orange County) and the pharmacist at Costco in Laguna Niguel told me a few days ago that the price could be enormous..I asked how much, and she said approx $500 for 1 RX...I'm hoping they are uninformed!

kdks99 | @kdks99 | Mar 5 2:56pm

I think that will depend on your insurance but I do not believe that is correct, Vertex has coupon on the Journavx site for i believe, $30 for a one month supply if you have Medicare, Medicaid or are a veteran. The moderator took down the link to the coupon but if you go to the Journavx website you will find it.. In addition someone on this thread suggested that insurance may cover this because of the legal issues around opioids. You may want to go back through the comments and take a look.

catheem | @catheem | Mar 6 10:10am

In reply to @kdks99 "I think that will depend on your insurance but I do not believe that is correct,..." + (show)

Yes, I was hoping she was wrong! There were 2 pharmacists who made the comment when I said I would pay cash - so maybe they quoted the cash price? I seriously think they are wrong! (at least, I hope so!). We really won't know for sure until it comes out!