1. < Chronic Pain

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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felicelinda | @felicelinda | Feb 1 9:03am

I read where it WAS APPROVED. However I read where the pills were unbelievably expensive. This could be the answer to so many people’s suffering….a life changer if it really works and is covered by insurance🙏🏻

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1 reply
kdks99 | @kdks99 | Feb 1 10:34am
In reply to @felicelinda "I read where it WAS APPROVED. However I read where the pills were unbelievably expensive. This..." + (show)
@felicelinda

I read where it WAS APPROVED. However I read where the pills were unbelievably expensive. This could be the answer to so many people’s suffering….a life changer if it really works and is covered by insurance🙏🏻

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I agree. If you have original Medicare I think they will have to cover it i.e. the NOPAIN act passed 1/25.. If not price may be prohibitive. Take a look back on this thread. I found this comment very relevant to your concern. I may not be allowed to copy and paste a previous comment but i'll try.

delewis49 | @delewis49 | 1 day ago
In reply to @mikaylar "Sounds promising but it will be a new patent so we will pay dearly until it..." + (show)
Initially, I believe you are correct. In the next fiscal year, Medicare should negotiate a lower price per dose ($15.50) and we can start to see what the insurance carriers really are more frightened of, lawsuits from patients that develop opiate use disorders because they could not obtain Suzetrigine because they were denied coverage, or the cost (maybe $3.00 per 50 mg) of Medicare negotiated pricing.
I have never been at the accounting end of medicine so I have no clue which way it will fall. What I do know is that the high initial pricing will lead to many additional drugs of the Na 1.8 volt class being developed and cleared which will completely change market dynamics - eventually. Hope most of us can wait.

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kdks99 | @kdks99 | Feb 1 10:36am
In reply to @delewis49 "Initially, I believe you are correct. In the next fiscal year, Medicare should negotiate a lower..." + (show)
@delewis49

Initially, I believe you are correct. In the next fiscal year, Medicare should negotiate a lower price per dose ($15.50) and we can start to see what the insurance carriers really are more frightened of, lawsuits from patients that develop opiate use disorders because they could not obtain Suzetrigine because they were denied coverage, or the cost (maybe $3.00 per 50 mg) of Medicare negotiated pricing.
I have never been at the accounting end of medicine so I have no clue which way it will fall. What I do know is that the high initial pricing will lead to many additional drugs of the Na 1.8 volt class being developed and cleared which will completely change market dynamics - eventually. Hope most of us can wait.

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I found this comment very relevant so I copied and pasted in totality in a response to another post. Hope that's ok. If not I'll delete it. Let me know.

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1 reply
delewis49 | @delewis49 | Feb 3 6:24am
In reply to @kdks99 "I found this comment very relevant so I copied and pasted in totality in a response..." + (show)
@kdks99

I found this comment very relevant so I copied and pasted in totality in a response to another post. Hope that's ok. If not I'll delete it. Let me know.

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I am fine with the copy and paste as I was writing my view of the situation with Suzetrigine.

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1 reply
rashida | @rashida | Feb 4 1:08am
In reply to @tr1 "I do not find any new clinical trials listed yet. But I did find information on..." + (show)
@tr1

I do not find any new clinical trials listed yet. But I did find information on who should NOT take this drug, which may be of interest. This is from the Vertex (news dot vrtx dot com) site:

IMPORTANT SAFETY INFORMATION

Patients should not take JOURNAVX if they take certain medicines that are strong inhibitors of an enzyme called CYP3A. Patients should ask their healthcare providers if they are not sure.

Before taking JOURNAVX, patients should tell their healthcare provider about all of their medical conditions, including if they: have liver problems. People with liver problems may have an increased risk of getting side effects from taking JOURNAVX; are pregnant or plan to become pregnant as it is not known if JOURNAVX will harm an unborn baby. Patients and their healthcare providers should decide if they will take JOURNAVX while they are pregnant, are breastfeeding, or are planning to breastfeed, as it is not known if JOURNAVX passes into breast milk. Patients and their healthcare providers should decide if they will take JOURNAVX while they are breastfeeding.

Patients should tell their healthcare provider about all the medicines they take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Taking JOURNAVX with certain other medicines may affect the way JOURNAVX and the other medicines work and may increase patients’ risk of side effects. Patients should ask their healthcare provider or pharmacist for a list of these medicines if they are not sure.

Patients should especially tell their healthcare provider if they take hormonal birth control medicine (contraceptives) containing progestins other than levonorgestrel or norethindrone. If they take one of these contraceptives (progestins other than levonorgestrel or norethindrone), they may not work as well during treatment with JOURNAVX. Patients should also use nonhormonal contraceptives such as condoms or use other forms of hormonal birth control during treatment with JOURNAVX and for 28 days after they stop taking JOURNAVX. Medicines that are substrates of the CYP3A enzyme may become less effective during treatment with JOURNAVX. Their healthcare provider may need to adjust the dose of patients’ medicine when starting or stopping JOURNAVX. Patients should know the medicines they take and keep a list of them to show their healthcare provider and pharmacist when they get a new medicine. Patients should not take food or drink containing grapefruit while taking JOURNAVX.

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@tr1 and @kdks99 I have fatty liver disease with scarring of the liver so I guess I could y take this medication anyway.

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kdks99 | @kdks99 | Feb 4 8:58am

Suzetrigine is now listed on drugs.com. I spoke with my doc yesterday and he's had many inquiries about this already. He thinks it will be in pharmacies in about 6 weeks. He will write me a script and try, through the NOPAIN act 1/25, to help me get medicare to cover it. I am going to try it and it will work or it will not work but I will post once I do. https://www.drugs.com/journavx.html

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2 replies
kimmygrl65 | @kimmygrl65 | Feb 4 11:36am

Thank You for writing that,it sounds like something I would be interested in trying I've tried so many things for my back pain including opioids ended up getting addicted to them and now am on Suboxone and would love to get off of that now. I've tried an injection that was supposed to help for that but it didn't work for me,my doctor said sometimes it doesn't work out for some people and lucky me I guess I was one of them. But anyway thank you for sharing.

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1 reply
babe2004 | @babe2004 | Feb 4 1:15pm
In reply to @kdks99 "Suzetrigine is now listed on drugs.com. I spoke with my doc yesterday and he's had many..." + (show)
@kdks99

Suzetrigine is now listed on drugs.com. I spoke with my doc yesterday and he's had many inquiries about this already. He thinks it will be in pharmacies in about 6 weeks. He will write me a script and try, through the NOPAIN act 1/25, to help me get medicare to cover it. I am going to try it and it will work or it will not work but I will post once I do. https://www.drugs.com/journavx.html

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I will be interested in how it works for you. From the little information that I have seen about this drug it is not known how it will work on chronic pain. I believe it is meant to be used for acute pain (at this point). Please keep us updated.

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1 reply
rashida | @rashida | Feb 4 2:25pm
In reply to @kdks99 "Suzetrigine is now listed on drugs.com. I spoke with my doc yesterday and he's had many..." + (show)
@kdks99

Suzetrigine is now listed on drugs.com. I spoke with my doc yesterday and he's had many inquiries about this already. He thinks it will be in pharmacies in about 6 weeks. He will write me a script and try, through the NOPAIN act 1/25, to help me get medicare to cover it. I am going to try it and it will work or it will not work but I will post once I do. https://www.drugs.com/journavx.html

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@kdks99 I was about to tell you, and send you the same link (I subscribe to drugs.com - it’s my go-to site), but you beat me to it! You really are on the ball with your research and information! 😊

Good news for Americans! I guess Canadians will have to wait a while longer before this is approved by our government health plan! I am going to forward the link to my doctor!

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1 reply
kdks99 | @kdks99 | Feb 4 3:34pm
In reply to @rashida "@kdks99 I was about to tell you, and send you the same link (I subscribe to..." + (show)
@rashida

@kdks99 I was about to tell you, and send you the same link (I subscribe to drugs.com - it’s my go-to site), but you beat me to it! You really are on the ball with your research and information! 😊

Good news for Americans! I guess Canadians will have to wait a while longer before this is approved by our government health plan! I am going to forward the link to my doctor!

Jump to this post

I read that Vertex is actively pursuing a global market...not sure where but I'll look for it. I think it may be available in Canada sooner rather than later.

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