1. < Chronic Pain

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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dg7 | @dg7 | Mar 21 8:31pm
In reply to @newsusan52 "It’s my understanding that generic or off label versions of new medication cannot be made available..." + (show)
@newsusan52

It’s my understanding that generic or off label versions of new medication cannot be made available until the initial patent secured by the developer/manufacturer expires. I believe the patent can be as long as ten years. If I’m right, this medicine will be priced out of reach for me because it won’t be on my insurance plan’s formulary. I welcome more information from anyone who may be better informed on this issue.

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You can use their savings card if you have govt. or private insurance. Copay would be $30. This info is on the journavx website.

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1 reply
kdks99 | @kdks99 | Mar 22 7:41am
In reply to @newsusan52 "It’s my understanding that generic or off label versions of new medication cannot be made available..." + (show)
@newsusan52

It’s my understanding that generic or off label versions of new medication cannot be made available until the initial patent secured by the developer/manufacturer expires. I believe the patent can be as long as ten years. If I’m right, this medicine will be priced out of reach for me because it won’t be on my insurance plan’s formulary. I welcome more information from anyone who may be better informed on this issue.

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It is totally confusing process. I am in the middle of figuring it out and will post here after i do. My part D will cover it with a pre-approval. Whether I can get that is unclear. The Journavx coupon will (on their site) be good for 60 days only, but you could try it and see if it's worth pursuing.

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pbrowni25 | @pbrowni25 | Mar 22 7:43am
In reply to @jjmjajjj "My doctor prescribed it for me today, my pharmacy has to order it so I’ll start..." + (show)
@jjmjajjj

My doctor prescribed it for me today, my pharmacy has to order it so I’ll start it Tuesday. I have a disorder where I metabolize medication faster than most (ex: opioid med that should last 8 hours will only work 2-3 hours)I also have EDS and fibromyalgia and I had emergency surgery 16 months ago because L5 was crushing S1 and S2. After surgery I was great until 6 months ago and pain started again but this time nobody can figure out why. I see an osteopathic pain and rehab in 10 days so I’m hoping between the new doctor and the new medication that I will be pain free soon! (Or at least able to walk without wanting to cry) And I have state medical insurance and it is covered.

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What state are you from?
And who is the doc?
Sounds like your in a lot of pain.

-Paul

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csho53 | @csho53 | Mar 22 9:59am
In reply to @dg7 "You can use their savings card if you have govt. or private insurance. Copay would be..." + (show)
@dg7

You can use their savings card if you have govt. or private insurance. Copay would be $30. This info is on the journavx website.

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Well, I tried getting it with insurance and without, in hopes that I could afford it. The pharmacy price was $320 with the insurance and they wouldn't apply the discount card. When they tried running it without the insurance, it kept saying I had Medicare Part D so again, no discount. No way can I pay $320 a month; how are y'all able to get this medication?

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1 reply
kenc | @kenc | Mar 22 7:39pm
In reply to @margaret10 "Off-label prescription for Journavx. My pain doctor (Metro Denver Pain) prescribed Journavx for my severe chronic..." + (show)
@margaret10

Off-label prescription for Journavx. My pain doctor (Metro Denver Pain) prescribed Journavx for my severe chronic neuropathic pain. I used the (one-time) coupon ($30), but once it's time for a refill, I plan to pay full price because it definitely reduces my pain by about half, depending on the barometric pressure and humidity. I've been on it only 5 days. Major drawback: nausea. Taking Pepcid but it only partially helps. May have to reduce from 2 to 1 pill a day.
If you're waiting for FDA approval for chronic pain, the phase 3 trial won't be over until May 2027, at which point the FDA will take several more months to make a decision.
I've exhausted all other options that are not contra-indicated for me. Gene therapy is not likely to become available for 20 years according to my neurologist - I hope she's wrong.

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I thought I read the FDA approved the medication Jan 2025. My doctor is prescribing to see whether it will help to reduce my pain.

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1 reply
margaret10 | @margaret10 | Mar 23 12:04am
In reply to @kenc "I thought I read the FDA approved the medication Jan 2025. My doctor is prescribing to..." + (show)
@kenc

I thought I read the FDA approved the medication Jan 2025. My doctor is prescribing to see whether it will help to reduce my pain.

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FDA approval was only for acute pain after surgery, not chronic pain. Many doctors will not prescribe "off label" for chronic pain. Fortunately, my doctor was willing to prescribe off label. The clinical trial for chronic pain is not expected to finish until May 2027.

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1 reply
szeszko1940 | @szeszko1940 | Mar 23 8:17am
In reply to @diannesmcneill "The medication can make you drowsy when first started that’s why Dr. starts lower dosage so..." + (show)
@diannesmcneill

The medication can make you drowsy when first started that’s why Dr. starts lower dosage so you body can adjust better

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I tried it and was super dizzy and it didn't help my pain,
Virgiinia

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1 reply
kenc | @kenc | Mar 23 11:10am
In reply to @margaret10 "FDA approval was only for acute pain after surgery, not chronic pain. Many doctors will not..." + (show)
@margaret10

FDA approval was only for acute pain after surgery, not chronic pain. Many doctors will not prescribe "off label" for chronic pain. Fortunately, my doctor was willing to prescribe off label. The clinical trial for chronic pain is not expected to finish until May 2027.

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Thanks. My doc is also prescribing the med off label.

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kenc | @kenc | Mar 23 11:11am
In reply to @csho53 "Well, I tried getting it with insurance and without, in hopes that I could afford it...." + (show)
@csho53

Well, I tried getting it with insurance and without, in hopes that I could afford it. The pharmacy price was $320 with the insurance and they wouldn't apply the discount card. When they tried running it without the insurance, it kept saying I had Medicare Part D so again, no discount. No way can I pay $320 a month; how are y'all able to get this medication?

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At times I used GoodRx to obtain script discounts.

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dg7 | @dg7 | Mar 23 11:18am
In reply to @szeszko1940 "I tried it and was super dizzy and it didn't help my pain, Virgiinia" + (show)
@szeszko1940

I tried it and was super dizzy and it didn't help my pain,
Virgiinia

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What dose were you on? Sorry that happened!

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