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

Here is what I see on the Journavx website. The week I took it was 50mg every 12 hours (twice a day).

You’re right! Thank you for the information. My insurance company will only pay for 30 pills a month. I have been on the phone with them numerous times and they are not changing their minds. I’m exhausted dealing with them.

Update: my PCP kindly agreed to give me a month’s worth. I had several days of crying with frustration and fatigue from poor sleep. I was waking at 3-4 am with too much pain to fall back asleep. I was so frustrated knowing that this solution existed to help me, and I couldn’t access it.
My first week Rx (in May) was $58. I found out that was a “ one time courtesy “ for a non- formulary medication. The actual price for one month, using discount cards and paying out of pocket, was $933!
I always said I didn’t care how much it cost for pain relief. In reality I couldn’t do it. So I got one week’s worth for $233, and now will start wrangling with Aetna. It’s tricky because it’s clearly being used off-label for me.
It’s working well as before. However, I’m already cutting down on the frequency so make my pills last longer (just typing that brings tears to my eyes).

Thai God it helped you! Hopefully one day, it will become widespread in its use if they get good managed care coverage where most can afford it. Keep us in the loop about your response to the drug.

I have some of the original prescription left to fill, but I’m saving it for a trip to NY in a few weeks to visit my sons. I used to walk all over the city. Last weekend I experimented with walking the length of the mall and back. It was pretty awful. So I’m saving my Journavx to take twice a day for the duration of the trip. Taking one here and there doesn’t seem effective. Also thinking about the $12 price of each pill doesn’t help.

I have a telehealth appointment with my neurologist tomorrow, then an appointment with my pain doctor in the afternoon. They both previously declined to prescribe it. I have more evidence to share with them now. Then my PCP is submitting a formulary exception to Aetna. Even with that, it will still be expensive. But I’m getting everything lined up to get a good supply, so I can try it again as prescribed, twice a day for consecutive days.

I also have a wonderful PCP who was willing to put me on a trial. Mic drop! I haven't felt this good in decades. And I'm not high. This is a game changer. My high blood pressure is even gone without my blood pressure meds. I guess cause the pain is gone.

Wow. That’s great. Question: does your PCP plan to continue prescribing it for you? I’m not sure mine will, after my first month is over, since he doesn’t have any reference data for continual use. The Journavx website does mention “3 months” as acute pain, which sounds like a sneaky way to approve a 3 month prescription. But I’m afraid I won’t be able to get more, after I get used to the relief.
I’m filling mine one week at a time, since insurance won’t cover it for off-label use. That’s a whole other topic. I am in talks with Aetna. So one month was $933 with discount coupons. I’m on Medicare, so can’t normally use discounts, but since I’m paying out of pocket, I can. Anyway, I’m basically hoarding it right now. I’m going on a big trip and want to take it twice a day during the trip, and have some left over for recovering when I get home. After that, I don’t know who will prescribe more for me.
So the pain relief is here, sitting in a bottle, but I’m not taking it!

Update: I took Journavx twice a day recently on a big trip to NYC. Again, it reduced my pain significantly. Reduced, not eliminated, but that’s worth a lot. The constant burning and hypersensitivity were gone. I still had all the muscle pain from walking, carrying a bag in the airport, etc.

Since I’ve gotten home, I’ve discovered a problem with having a small supply on hand. I give in to temptation and take one every 1-2 days. My doctor wrote another 30 day prescription, so I can keep some on hand.

The issues with this is that I’ve found it works better if taken regularly twice a day for consecutive days. At $15 per pill, and limited access to a continuous supply, just can’t do this. I spent about $1000 on the first bottle, filling the prescription one week at a time, and stretching out the doses. I can’t afford to do that! Aetna Medicare (I am on disability) has refused to cover it, and said no to a formulary exception. Secondly, I know my kind PCP would never give me a continuous prescription while it’s not approved for chronic use.

I just checked the Journavx website. The FDA has refused their request to approve it for all types of neuropathy. So they are focusing their trials on diabetec neuropathy, because the FDA approved that. They have abandoned efforts to get it approved for all neuropathy.

This is very disappointing. Does anyone have contacts at the FDA - ha.

My husband gets hyped up on Tramadol and then does a nightly Dr Jekyll 🤯😔I am going to see if he can try this new med.

It’s worth a try! The way it is working differently for those of us piques my interest about the different types of nerve dysfunction.