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.

@mmalone1804

Do you know if there’s a protocol for transitioning from opioids to Journavx? I am on Belbuca with Oxycodone for breakthrough pain. Can these drugs be taken together while titrating off the opioids?

Jump to this post

From reviewing the research and talking to my pain doctor I think Journvx can be used as an adjunct to pain medications. It may allow patients to take less of their pain meds. I suggest you look at the design of the acute pain study (Google Scholar) The problem is most doctors know very little about this drug so I've found reviewing available information utilizing AI and Google Scholar has been helpful.

REPLY

I too suffer from chronic pain from post herpetic neuralgia. It's debilitating. I ask my pain mgmt doctor if it's available yet, every time I speak with him. Finally, a non-opiod medication. Please let me know if you hear anything. My doctors are dead set against prescribing opiates. The only med that has helped me was given to me when I broke my hip. It was fentanyl and I doubt I can get a prescription. Of course, my first thought was death because of all that you hear in the media. I can see why people would get addicted. Thank you for bringing this up.

REPLY
@fmmartinez58

I too suffer from chronic pain from post herpetic neuralgia. It's debilitating. I ask my pain mgmt doctor if it's available yet, every time I speak with him. Finally, a non-opiod medication. Please let me know if you hear anything. My doctors are dead set against prescribing opiates. The only med that has helped me was given to me when I broke my hip. It was fentanyl and I doubt I can get a prescription. Of course, my first thought was death because of all that you hear in the media. I can see why people would get addicted. Thank you for bringing this up.

Jump to this post

I suggest you read through all the comments on this post. Lots of thoughts and some information. It is available but most doctors know nothing about it because it is a novel pain med.

REPLY
@fmmartinez58

I too suffer from chronic pain from post herpetic neuralgia. It's debilitating. I ask my pain mgmt doctor if it's available yet, every time I speak with him. Finally, a non-opiod medication. Please let me know if you hear anything. My doctors are dead set against prescribing opiates. The only med that has helped me was given to me when I broke my hip. It was fentanyl and I doubt I can get a prescription. Of course, my first thought was death because of all that you hear in the media. I can see why people would get addicted. Thank you for bringing this up.

Jump to this post

It’s great to hear that there might be something down the road. It’s better than hearing. As I said, another post, I used gabapentin and pregabalin and I don’t have any qualms with it look my neuropathy is going to be with me for life and it’s gonna get progressively worse and whatever medication it takes to help me function both physically and psychology I accept the fact that pregabalin is addictive gabapentin eventually runs his course and then I’m gonna have to use other drugs to maintain the stability in my life. That being said if it was necessary for me, I’m not against taking opiates. I am against abusing them just my thoughts quickly. Have a great day.

REPLY
@kdks99

From reviewing the research and talking to my pain doctor I think Journvx can be used as an adjunct to pain medications. It may allow patients to take less of their pain meds. I suggest you look at the design of the acute pain study (Google Scholar) The problem is most doctors know very little about this drug so I've found reviewing available information utilizing AI and Google Scholar has been helpful.

Jump to this post

Thank you! This is very helpful. I meet with my PM doctor next week, and I’m going to bring it up. I’ll get started on the research ahead of time; something I usually do anyway.

REPLY
@fmmartinez58

I too suffer from chronic pain from post herpetic neuralgia. It's debilitating. I ask my pain mgmt doctor if it's available yet, every time I speak with him. Finally, a non-opiod medication. Please let me know if you hear anything. My doctors are dead set against prescribing opiates. The only med that has helped me was given to me when I broke my hip. It was fentanyl and I doubt I can get a prescription. Of course, my first thought was death because of all that you hear in the media. I can see why people would get addicted. Thank you for bringing this up.

Jump to this post

I go to a specialized pain doctor for Percocet. I have a prescription for 7.5 mg, and take 1/2 pill 3-4 times per day. It doesn’t take away all the neuropathy pain, but it gives me a break. I have been on this for 10 years. I’m not worried about “addiction “ (I’ve never used drugs, smoked or drank alcohol) but I’m worried about someone who has never experienced chronic pain deciding that I need to suffer even more than I already do. Pictures of my face are good at showing the effects of years of chronic pain. Look back at your Facebook pics. This year I did a “thing”. I’ve had Botox injections between my brows. Not for glamour, but because my brows are constantly drawn together from chronic stress and pain. I couldn’t raise my eyebrows. Botox relaxes that clenched muscle, and I feel instant relief.
Don’t let ANYONE tell you that pain control is bad for you.

REPLY

i agree totally. Every pain sufferer has a human right to access to the most effective pain medicine available and compassionate respectful care. Just a thought, you may want to ask your pain doctor about adding Journvx to the meds you are taking. In my experience it's not a stand alone but might improve the efficacy of the meds you take, already. It's in clinical trials for neuropathy but the results won't be in for a long time.

REPLY
@andyjustin

It’s great to hear that there might be something down the road. It’s better than hearing. As I said, another post, I used gabapentin and pregabalin and I don’t have any qualms with it look my neuropathy is going to be with me for life and it’s gonna get progressively worse and whatever medication it takes to help me function both physically and psychology I accept the fact that pregabalin is addictive gabapentin eventually runs his course and then I’m gonna have to use other drugs to maintain the stability in my life. That being said if it was necessary for me, I’m not against taking opiates. I am against abusing them just my thoughts quickly. Have a great day.

Jump to this post

If you are thinking about adding Journvx to your current regime it's possible that it's not advisable if you're taken gabapentin. I really do not know but just wanted to mention the possibility so you can discuss with your doctor.

REPLY
Please sign in or register to post a reply.