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I am starting a new discussion about 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 spoke with my doc and he will prescribe for me as soon as available...I have chronic pain so I will be a sample size of one. I want to be sure that everyone who has expressed interest is aware of this. (my doctor was not) https://www.journavx.com/support
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1 ReactionThank you
Also, this drug is for acute pain. Mine is chronic
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1 Reaction$13.50 a pop and 2 per day are recommended. How long doe it take insurance or GoodRx before they cover it?
My pain is chronic, as well. I am going to try it when available. After reviewing the clinal trial results I am hopeful that a better designed Phase 3 trial for chronic pain will yield better results but who knows? I will let you know if it works for my chronic pain but I'm a sample size of one. The side effect profile seems to be good so I'm willing to try....but you're right no one knows if it will be helpful for chronic pain. I think it will be covered if prescribed off label but I'll let you know that when I find out.
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1 ReactionI think this will be covered by Medicare and maybe even most insurance. FYI a step in that direction. https://www.journavx.com/support
Yes, I saw it a couple of days ago (my internet carrier went out on us yesterday and left us w/o service until this AM) so I hadn't seen your post until now.
This coupon is certainly a start. Please make use of EVERYTHING that makes this Rx as affordable as possible until it becomes a Medicare listed and subsidized drug.
As I see it right now, the other problem is availability. My wholesaler doesn't have any and its backordered for weeks, if I go the Rx route my retail pharmacy didn't know what I was inquiring about, so they don't have it yet. My long time internist knows all about it and can prescribe it but right now only his hospital pharmacy has it and they won't ship or deliver and I am 900 miles away. My daughter knows all about it and her institution has it, but our deal is for her not to prescribe for her parents until we are in patients. It as a reasonable deal since she doesn't want to get involved in pain Rx's for family members that might get messy. So, getting Suzetrigine right now might be hard. If you find a good , reliable pharmacy, that has it, let us all know.
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1 ReactionHow can I find out where and when it will be available? My doctor will write a script but I can't figure out how to locate availability and he won't help with that. Any pointers will be greatly appreciated. (When you say wholesaler I'm not sure what you mean.) Thanks in advance.
Vertex has serious side effects. It causes serious kidney and liver side effects to be more specific. During the drug trial, the placebo ranked higher than Vertex for pain relief!! In my opinion, this is just another money grab that wealthy people/companies and Congress, (left and right) have invested in. Vertex has gotten more than $10 billion dollars from investors so far.
Because Vertex is a “non-opioid medication,” which is the trending phrase among doctors and the DEA stating we’re in a (manufactured) “opioid crisis.” We are actually in an illicit opioid crisis. Which the DEA isn’t doing enough because the DEA gets kickbacks from the cartels so they’re going after chronic pain patients and their doctors instead to make it look like they’re doing something. We’re being gaslit from every direction. Some hospitals are only giving IV Tylenol & Ibuprofen (both have bad side effects) for post operative pain; including C-Sections, amputations, etc. Vertex is just the first of many more drugs to come out because of grifters.
You can find any of what I‘ve said in a google search.
Please don’t think this is some kind of miracle drug. It has serious side effects. During Vertex’s drug trial, the placebo ranked higher in pain relief. You can read my detailed post below.