Journavx (suzetrigine) new non-opioid medication for acute pain

@julbpat The loading dose as stated in the literature is 2 pills to start; then, at night I take 1/2 a 10 mg gummie; that way I can sleep. My pain doc won’t prescribe more; he’s “by the book” re the acute pain issue; but, I will ask my IM doc if she will. I will call the patient support # tomorrow & tell my story. Thanks. I totally understand your desire to have a pain free life - it’s priceless!

My pain doctor and neurologist would not prescribe it. FYI, loading dose means the very first dose you take at the beginning of a new medication to load your system. So you take 2 for your first dose, then one twice a day after that. (I am an RN). But I think your routine is pretty good. I know that 50 mg isn’t enough for me, and it doesn’t last 12 hours. The actual dose they eventually settle on for our neuropathy pain will be higher than 50 mg (in my opinion).

I don't blame those of you complaining about this drug that has given you your life back one bit. I tried it for my severe, chronic lower back pain. I tried my limited 30 day supply in several iteration... 50 mg/2x daily; 2 pills at a time. no good. No effect. I can attest to the fact that chronic pain can be debilitating, much more so than acute pain. Acute pain will usually improve over time and you will feel better. Not so with chronic pain. It can be there 24/7, the burning, tingling driving you crazy. The drug company needs to hurry up on their testing so that people who experience this kind of pain can have hope that their drug won't be ripped from their hopes after just 30 or 60 days, unless they are willing to go bankrupt. My thoughts and prayers are with you all.

Your post has given me a ray of hope. My quality of life is controlled by ideopathic small fiber foot neuropathy. I get visited about every other night. The RX's I have used are as erratic in the relief they provide as the condition itself! Have been trying for months to get an RX price I can afford. The coupon they offer was denied b/c my RX plan approved the drug. Go figure. So glad to hear it helped you. Hope to find the same relief, without having to pay what essentially amounts to a car payment each month.

For an update, I am still taking this twice a day. It helps so much. As for paying for it, I alternate two credit cards that give me some benefits like airline miles or cash back. Yes, they both have a high balance now. I scramble around pulling my meager resources from other areas to keep the balances from getting too, too high. I sell things. I withdraw from my small IRA.
Isn’t that crazy? But as we all know, after years of relentless pain you will do almost anything for relief.
I have registered with Vertex Pharmaceuticals as a patient. They can’t help me since I am using it off-label. Right now studies are being done for use with diabetic neuropathy. Keep an eye on their website for updates to these studies. One day you might be surprised to find that you qualify for Journavx. I won’t, because I do not have diabetic neuropathy.

@julbpat
I heard it causes moderate liver damage. What did your doctor say?

I don't see that listed as a side effect on their website. Where did you read that? If that were the case, my doctor would follow me closely with lab work, and watch for any signs of liver toxicity. But I don't see that listed anywhere as a common side effect.

Oh, and somehow it only cost $230 this month. My insurance approved it as an off-formulary drug. I don’t know why and I’m not asking any questions! I also was able to get some samples, so that helps too.

I am glad to hear that some of you have had some relief using Journavx. As I posted previously, I had no relief with this drug. Like many of you, I tried several, different iterations with no relief. I just came back from a different pain doctor here in Delaware. I was hoping to get some new treatment options. No such luck. She went over all the standard treatment options... injections, alations, surgeries, SCS, pain pump, etc. Check, check, and check. The only thing different that she mentioned was ketamine infusions, which is not covered by insurance. I would gladly pay out-of-pocket if it worked. Would like to know your experiences with ketamine and how much you paid, etc. I am pretty much resigned to spending the rest of my life with this chronic pain that has robbed me of the joy of my retirement. Thanking you all for your responses.

@heisenberg34 I too have been told about ketamine infusions. My neurologist (in another city) was not actually endorsing it, just stating that he had some patients that got relief from it. I think here it was $4-500 per infusion. I stopped in the only clinic I could find that advertises ketamine infusions. It is owned by some local ER physicians. It was in a sketchy, rundown shopping center at a suboxone clinic. The receptionist was counting large sums of money behind the desk (cash only business). I looked around and said "'nope". Guess I wasn't desperate enough! But apparently it is a helpful treatment.