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.

I’m awaiting market arrival. Am concerned that I will be a Guinea Pig as the drug is so new but anxious to test its efficacy.

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@frankiefairway

I’m awaiting market arrival. Am concerned that I will be a Guinea Pig as the drug is so new but anxious to test its efficacy.

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I spoke to my doctor last week regarding taking this drug for chronic pain. We are likely going to start on it when it comes out this month. First to see if it helps in the short term and if so to continue for a longer trial. I am also a bit nervous about long term side effects, however I am more interested in relieving my pain.

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@bumber

I spoke to my doctor last week regarding taking this drug for chronic pain. We are likely going to start on it when it comes out this month. First to see if it helps in the short term and if so to continue for a longer trial. I am also a bit nervous about long term side effects, however I am more interested in relieving my pain.

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What is the medication called as I also suffer from Chronic Pain every day for at least 10 years, I would be grateful to find something that would help.

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@bumber

I spoke to my doctor last week regarding taking this drug for chronic pain. We are likely going to start on it when it comes out this month. First to see if it helps in the short term and if so to continue for a longer trial. I am also a bit nervous about long term side effects, however I am more interested in relieving my pain.

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I hope to do the same.

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@kimmygrl65

What is the medication called as I also suffer from Chronic Pain every day for at least 10 years, I would be grateful to find something that would help.

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I'm not sure if the monitor will allow this but this a link to the information. https://www.drugs.com/journavx.html

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@frankiefairway

I’m awaiting market arrival. Am concerned that I will be a Guinea Pig as the drug is so new but anxious to test its efficacy.

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Me, too.

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Thank you for your information. For some reason my current PCP is hesitant to prescribe for chronic pain even though the risk/benefit ration surely indicates a trial. I suppose I will have to doctor shop although I've been offered opioids by my pain doctor which I always refuse.

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-PLEASE fda APPROVES LET ME KNOW WHEN.

ALL i GET ARE MONTHLY INJECTIONS.]
TRIED ALL PAIN MEDS EVER MORPHINE--TYLENOL WITH CODEINE AND MANY OTHERS

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@delewis49

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.

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I'm very interested and making sure I'm hearing this correctly and there's availability at this current time? And it looks like there is patient assistance but that's not approved yet through Medicare. That would probably be my only way of affording it. Thank you for your input I am definitely following this.

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Vertex told me it will be on the shelf in March. There is a coupon for those on Medicare, Medicaid and veterans but the moderator would not let me share it here so you'll have to search...so sorry.

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