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.

kdks99 | @kdks99 | Mar 17 3:32pm

In reply to @anoyymous123 "What is cost-Very expensive-Is it covered by medicare?" + (show)

It is covered by my part D but in fact, being covered makes it harder/impossible to use the coupon Vertex offers. If it is refused you can use the coupon. It requires prior authorization if that is refused then you can use the coupon. It is incredibly confusing and I have trying to figure it out and will try to post here as I get more clarity.

kdks99 | @kdks99 | Mar 17 3:34pm

In reply to @heisenberg34 "I looked on GoodRx and the monthly cost is around $900. Not sure if insurance covers..." + (show)

In reply to @anoyymous123 "What is cost-Very expensive-Is it covered by medicare?" + (show)
It is covered by my part D but in fact, being covered makes it harder/impossible to use the coupon Vertex offers. If it is refused you can use the coupon. It requires prior authorization if that is refused then you can use the coupon. It is incredibly confusing and I have trying to figure it out and will try to post here as I get more clarity.

kdks99 | @kdks99 | Mar 17 3:38pm

In reply to @dg7 "It's my understanding that Medicare does not cover it, BUT if covered by them or commercial..." + (show)

I just tried to reply with information I posted previously and the moderator would not allow it. If you scroll through previous questions and my replies you will see it. The insurance process is extremely confusing and I wanted to share what I am discovering.

Colleen Young, Connect Director | @colleenyoung | Mar 17 4:41pm

In reply to @kdks99 "I just tried to reply with information I posted previously and the moderator would not allow..." + (show)

@dg7 here is the post that @kdks99 is referring to with insurance information https://connect.mayoclinic.org/comment/1260492/

@kdks99, the system automatically puts a hold on duplicate posts to prevent bots from spamming the community and to keep members safe.

If you wish to share a previous post with someone else, you can share the link with them like I did above. Here's how:
1. Go to the post you wish to share.
2. Click the 3 dots to the bottom right of the post.
3. Select "Copy link to clipboard"
4. Paste the link in your new message.

Find more tips in the Help Center https://connect.mayoclinic.org/help-center/

kdks99 | @kdks99 | Mar 18 9:03am

In reply to @colleenyoung "@dg7 here is the post that @kdks99 is referring to with insurance information https://connect.mayoclinic.org/comment/1260492/ @kdks99, the..." + (show)

Thanks for clarifying. I just couldn't understand why I could not copy and paste purely informational posts. I have so much information about Journavx that might be helpful.

rks1947 | @rks1947 | Mar 18 1:07pm

In reply to @heisenberg34 "It's like most of these new drugs. They hope to hook those who can afford it..." + (show)

Many drugs are that much And more. Ozympic is a $1000+. Free market.

heisenberg34 | @heisenberg34 | Mar 18 1:42pm

In reply to @rks1947 "Many drugs are that much And more. Ozympic is a $1000+. Free market." + (show)

I know all too well. I don’t know how people can afford these drugs before generics are available. Will insurance even cover them?
My Medicare Advantage will pay $300 of the $900 a month. That’s still $7200 a year out of pocket!