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.

Like Helpful Hug

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

rks1947 | @rks1947 | Feb 17 11:20am

Free market

lorilynn13 | @lorilynn13 | Feb 18 2:25am

Thanks for info, I haven’t been able to get my meds for 3 years because I can’t afford them. They did pay for 1/2 of them but then all of a sudden they quit and I could no longer get them. Hopefully this website will give me some help. 😄

kdks99 | @kdks99 | Feb 18 7:53am

In reply to @lorilynn13 "Thanks for info, I haven’t been able to get my meds for 3 years because I..." + (show)

For some reason the moderator would not let me share a link for a journavx coupon but you can find it. It is only good for people on Medicare, Medicaid, or veterans. If you scroll through all he comments some people had thoughts on insurance coverage. Good luck!

kenc | @kenc | Feb 20 8:19am

In reply to @lorilynn13 "Thanks for info, I haven’t been able to get my meds for 3 years because I..." + (show)

Try GoodRx. I used it, at no charge, to get a pretty good discount on a med that I am taking.

jthomas458 | @jthomas458 | Feb 21 9:54am

Is the medication working well for you?

pbrowni25 | @pbrowni25 | 4 days ago

YES!
Can't wait for an update.
Your very kind.

Paul

kdks99 | @kdks99 | 3 days ago

In reply to @pbrowni25 "YES! Can't wait for an update. Your very kind. Paul" + (show)

it still is not on the shelfs (hospitals may have it). I spoke with Vertex yesterday and they said March. I will post here when it is available if the moderator allows.

fmmartinez58 | @fmmartinez58 | 2 days ago

In reply to @kdks99 "it still is not on the shelfs (hospitals may have it). I spoke with Vertex yesterday..." + (show)

I am in chronic pain and heard about this non-opiate pain reliver. I did some research and I spoke with my pain mgmt doctor. It's newly FDA approved. The studies were done on acute pain patient's and and is suppose to be avaliable tomorrow. It will depend on your pharmacy. Studies are now being done for those of us that have chronic pain. My doctor will keep an eye out for the progress. It's hopeful and new pain medications have not been introduced to the market for over twenty years. Apparently, it's like a few of the therapies that they have now, but in a pill form. It scrambles the messages between the painful area and the brain. 🙂

kdks99 | @kdks99 | 2 days ago

Yes. All true. The phase 2 clinical trials for chronic pain were poorly designed so the jury's still out. Some of us will try it...the side effect profile compared to placebo was very positive....and hopefully share our experience here.

delewis49 | @delewis49 | 2 days ago

In reply to @kdks99 "Wanted to be sure you saw this and would welcome your thoughts. https://www.journavx.com/support" + (show)

Yes, I saw it and welcome any help a patient can get.
Vertex certainly wants to attract as many new patients before they get competition in this space as they certainly will get as research in this field has been ongoing for probably 50 years since the early discoveries of selectivity in blockage of the various Sodium Channels (NaV gates) thoughout the neuronal network of the body. The 1.8 Volt Sodium Channel just happens to selectively be the one that the pain nerve fibers transmit pain impulses up the spinal cord to the brain. If you used a totally non-selective NaV Channel Blocker you would kill the patient very rapidly, ie Tetrodotoxin of the puffer fish and lately the plastic surgeon's office. It is the remarkable selectivity of this drug that makes it useful. It is the First of its class. It won't be the last. Drug companies like to let the small guys do the heavy lifting then put out a slightly better one and out market the little guy. I've watched this for 50 years as a practicing forensic toxicologist. It has been interesting.