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Suzetrigine - a novel drug for pain
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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I have neuropathy from chemo also. I have found that taking an ice bag and holding it in the palm and then on the other side really helps. I let the hand get very cold before flipping it over. I'll give it time to return to normal temperature and do it again. I do the feet the same way. I soak them in Epsom salt and I add a few ice cubes to water. Not too cold though. I couldn't believe how much better the neuropathy was the next day. I need to do it every day but I don't and I can tell because the numbness slowly starts coming back. For those 2 or 3 days though it was the best feeling. I could actually pick up a pill I dropped with that hand. 😊
The CDC still recommends opioids for long-term chronic pain. I have that for a problem that can’t be fixed ALL of my doctors are supportive where I ditch them. About the nerve pain. I just spoke with my surgeon yesterday and we talked about this exact thing. It can take up to 10 years for nerves that are damaged to be remodeled or to be considered permanently a problem. I have some of those nerves that were squished in my L3 L4, L5, major nerve root for way too long because a neurosurgeon wouldn’t do surgery. When the nerves are damaged, they can cause inflammatory reactions. So if you can isolate the nerve branch in route, you can deal with the inflammation that causes the pain. If you can isolate and treat the inflammatory reaction, then you can get pain relief. In my case, it doesn’t last more than a month, but because there was nothing else anyone was willing to do. I started on a ramped up exercise program, and that has taken care of the unbearable pain. I ride my stationary bike and answer Mayo Clinic forum messages for an hour hour and a half every day, and it never gets dull.! What that did was amazing for my nerve damage which runs from my sacral joint to my hip to the outside of my knee to my shin to the top of my foot to my big toe on the left side, it’s all where the nerve was damaged when the disc fell completely out seven years ago, and my vertebrae grafted themselves together. When they did that, I actually had no pain, but the surgeon I saw, which is my prince wanted me to rush and do surgery for which I was ready after 20 years of unsuccessful stuff. It was amazing the relief I got except for it seems that my nerves on that side are damaged after seven years yet still. He increased an exercise now is handling that. I am so exhausted when I fall into bed that the pain doesn’t wake me up anymore and I can sleep through the night. The pain is also very minimal to nonexistent during the day. this morning it was foggy and drizzly here in San Diego and I was pretty miserable and I was up last night from all kinds of aches and pains, which are arthritis and inflammatory related. I know some days are gonna be bad and that’s that. I go to a great surgeon and I have a great team of doctors that I pick and choose carefully. I’ve gotten four opinions on the spine surgeon and so I met my true Prince and there I will stay. I go four times a year, maybe three or two depending on where I am in process but now that I’ve started this extensive gentle exercise routine. My report yesterday at the surgeon was absolutely glowing! There has been zero deterioration over the last three months when I started the exercise program before that there was slight deterioration every three months in the x-rays. @heyjoe415 discuss the miracles of physical exercise in this group and I apologize to him that I didn’t get back to his last message but I’ve been so busy with managing the 50 year reunion and doctors that I’ve had no time to respond much! Good luck!
Since they can't remove the growth on the adrenal gland the standard treatment is to remove the growth and gland. That's it until something better comes along which is one reason I'm participatiing in research at Mayo. In talkng with my Mayo endocrinologist, she doesn't recommend a partial adrenalectomy, but did mention that cryogenic ablation is possible, but she wouldn't recommend it for me at this time.
I asked my pain doctor about Journavx. He didn't bring it up to me. I have had chronic pain. He did prescribe it for me and I took Journavx for two weeks. I had NO pain relief from it. I experienced no side effects.
Have a spinal stimulator implant done. It will be life changing for you.
I have most likely more damage to my lumbar area than you and it relieved, at minimum 80% of the pain.
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1 ReactionI applaud your dogged persistence in getting your pain under control through exercise. If I may ask you something, I have pain from my lower back to my buttocks from a fall nine years ago. Have had all the usual meds, surgeries, implants, etc. In the last five months I have developed pain that radiates down my legs to my toes. The few times I tried exercising or riding my bike, my pain ramps up so badly that I stop. Dis you experience that at all? And, did you just power through the pain until it sort of "gave up"? Everything I have read says to be sure to exercise in order to help neuropathy. But, what do you do if the pain gets worse? It's a real pickle. Appreciate your thoughts.
I absolutely suggest that you find a good MFR therapist and have a few area specific treatments and get some assistance determining the origin of your pain. Is it scar tissue? Is it myofascial muscular? Is it impinged nerves? After a few treatments you will be able to determine if it’s nerve related or something else. At the same time I’d make sure that I was visiting some orthopedic doctors who look at your structure to make sure there is no disc compression or nerve root impingement and they could also send you to an EMT, which is a nerve doctor. The nerve doctor triggers nerves to determine where the damage might be. So first what you need to figure out is if the pain is telling you that you have some issue that needs to be dealt with before you create a consequence with exercising. My pain was really bad. But what I did was find a place where I could start where I had no pain and work from there. So for example, 30 seconds on the exercise bike or 30 seconds of walking good then you move to a minute then you move to five minutes to thirty minutes to an hour hour and a half when I was around thirty to sixty minutes I noticed the pain was starting to diminish at night and while I sleep and while I Exercise. sometimes the pain comes back a little, but I noticed how it’s correlated to some bad eating habit or some bad barometric weather change (fog and humidity and marine layer really put me in a bad way.) . If you can get into a rehab program, which Medicare covers, I don’t know how old you are. That is a good place to start because they monitor you and you report to them and tell them if something they are doing causes you pain. They are also a way to determine and narrow your focus. I have left rehab after 30 years of dealing with many companies and many issues because I could do it on my own much more effectively and the rehab places. The people got younger less experienced less helpful and they actually caused me more pain and stiffness. Don’t handover your intuition and your trust to anyone. Make sure you stay involved in your own self-care. To this day, I’m not very comfortable with the opioid, but I really have no choice. I would behave like a vegetable without it. Although I don’t feel addicted because there are times I can go without it if the moon, the sun, and the stars align along with the barometric pressure.:-) a gentle walk is always my favorite, however even that this past year was painful as the outer part of my leg below the knee and below started incurring lots of nerve pain that eventually grew from my sciatic down to my big toe. Most of that has been temporarily resolved with adding an hour a day of gentle cycling to my walk in the morning and my walk at the end of the day. It’s just what has to be in my life no matter how many other things I have to do. The time I need to invest in movement/exercise reduces the time I have for other interests and obligations. It just takes priority in order for me to lead my best life. I’m walking the dog so if my grammar isn’t perfect and I didn’t cover something. Just let me know! And thanks for your question.
Hi Lorie,
You do not have to apologize to me. I'm just very happy that exercise has helped so quickly with pain management.
I'll say again, my lumbar spine is a disaster area with scoliosis, stenosis, listhesis, and overall disc degeneration and arthritis everywhere. We moved to WI from CA in 2018 and I found a new ortho group. I spoke with the spine surgeon, and he said point-blank after seeing my xray that my core muscles were literally all that was protecting me from the need for spinal fusion - at least three - S1/L5/L4.
And core exercises are simple and can be done at home. I just encourage people to find a good, reliable source for core conditioning. I'm fortunate to have a very experienced trainer I see 2x/week. I also strongly suggest you consult with your Dr before starting or increasing an exercise program.
So Drs aren't blowing smoke when they encourage us to maintain a healthy weight and diet, and exercise, especially the core muscles.
(Lorie mentions the stationary bike. I take spin classes and spin on my own 5x/week. By sitting almost upright, with a slight forward bend to keep mu lumbar spine aligned, I'm getting a cardio workout and spinning properly also engages the core muscles. Two for one.)
Thanks again Lorie!
Joe