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

kdks99 | @kdks99 | Mar 20 10:39am

In reply to @rorygirl "JOURNAVX is a prescription medicine used to treat adults with moderate-to-severe short-term (acute) pain." + (show)

Yes, I am aware of this.

csho53 | @csho53 | Mar 20 10:44am

My husband's pain management doctor wrote a prescription for Journavx but with the insurance it's still over $300 per month. I have the savings coupon for $30 but don't know yet if the pharmacy will honor it. It says on the coupon that the $30 co-pay does not apply to those with Medicare, so if that's the case, he won't be able to afford it. You would think those on Social Security would be eligible since they're on a fixed income. So frustrating!!

dg7 | @dg7 | Mar 20 12:02pm

In reply to @csho53 "My husband's pain management doctor wrote a prescription for Journavx but with the insurance it's still..." + (show)

This is off of the journavx website:
"The JOURNAVX Savings Card can be used by patients with commercial or government-sponsored insurance, such as Medicare, Medicaid, Veterans Affairs, and TRICARE."

linda6101 | @linda6101 | Mar 20 2:59pm

In reply to @csho53 "My husband's pain management doctor wrote a prescription for Journavx but with the insurance it's still..." + (show)

I was at my pain specialist yesterday and he is not so fond of Journavx because he says it's similar to Gabapentin which I'm already on. Does your husband have Blue Cross RX as a supplimental coverage? If so, give them a call and see if it's covered.

margaret10 | @margaret10 | Mar 21 6:13am

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.

diannesmcneill | @diannesmcneill | Mar 21 6:14am

In reply to @frankiechi "is anyone on this site using Gaba? I picked up a prescription today and the warning..." + (show)

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

bumber | @bumber | Mar 21 8:03am

My pain doctor wrote the script and I started the drug yesterday. I will update this post as I see how well it works.

dg7 | @dg7 | Mar 21 10:12am

In reply to @bumber "My pain doctor wrote the script and I started the drug yesterday. I will update this..." + (show)

Is it "take as needed" or take every day?

bumber | @bumber | Mar 21 11:08am

Seems to be everyday as that’s how it was in the clinical trials

jjmjajjj | @jjmjajjj | Mar 21 4:31pm

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.