A possible answer for pain,

[Nanci H]

I have a very severe case if ME/CFS. My doctor of many years says I have the worst case he‘s ever seen. I win - yea me. But I have at least come across a drug that controls and possibly eliminates pain. I still have the host of symptoms, all of which remain after taking this drug. EXCEPT PAIN. I was on the highest dose possible of OxyContin AND Fentanyl and they had stopped working. With no where else to go for relief, I was quite literally suicidal. When I mentioned the “suicidal” part to my doctor, instead of freaking out and putting me on the nice little wagon with all the pretty lights and shipping me straight to a psyche ward, his only response was “uh huh”, He’s been with me through all of this, so he got it. I have been following the progress of a new drug called Journavx for quite some time, but presumed that it would not be approved by the FDA in my lifetime. And some drugs are never approved. So you can imagine how excited I was that the drug had been passed by the FDA in just 14 days! And NO I’m not a shill for this drug. I just thought it was important enough that some people on this board would want to know about it, Immediately I sent the Journavx web site to my doctor with a strong “I want to try THIS”. His one hesitation was “it’s only been tested for 14 days; are you sure you want to try this?” My response was that my friends and family had all seen the condition I was in and that if he killed me with experimentation, nobody would give him a bit of grief. I felt a difference after the FIRST pill, and complete pain relief by the second day. So I would literally say that this drug saved my life. Yes there ARE side effects - an itchy rash (cortical steroid cream and a course of Prednisone seems to have knocked that out. I also have numbness in my lower legs which is pretty miserable, but I can’t say that’s a side effect; could have been there all along just masked by the pain. All the other un-fun symptoms of ME/CFS are still in full swing: relentless fever, total exhaustion, inability to leave my darkened bedroom, POTS, brain fog, and a bunch of other stuff. But for anyone considering Journavx as a answer to intractable pain, this just might be your solution. One final thing: I was blessed to not have an “addictive brain” - my own opinion is there’s no such thing as an addictive personality, just the brain configuration that gets hold of opiates and immediately starts making more receptors on the brain for pleasure and pain. Thus some people can take one hydrocodone and are instantly hooked. But as I said, it there is a bright side in the hell of this disease that I still live in, it’s that I was able to wean off the Oxy in less than a week, and off the Fentanyl in three days. Hallelujah! I don’t see pain reported here as often as a lot of the other symptoms, but I really do hope this helps somebody. This board has often been a life saver for me. Sadly, it‘s not cheap, but if you’re interested, please post in this thread and I’ll tell you what little I know about fighting that,

 

[Sarah R.]

That's very hopeful, Nanci H.! Thank you for letting us know. Was your pain primarily in your legs?

I'd love to know more about reducing costs for this drug. I'd love to try it, and I have trouble adding new drugs if they're expensive.

Sarah R.

 

[Nanci H]

I TOTALLY understand your issue about trying new drugs when they’re expensive. Yes, my pain was primarily in my lower legs, and was beginning to move to my hands. I’ve probably already mentioned this, (brain holes), but I was already on the maximum dose of Oxy AND Fentanyl and they had quit working, so I was hurriedly making sure my will was in order. The new drug, Journavx cleared the pain in TWO DAYS!!!

I have Aetna Medicare Plus and they weren’t going to pay any of it; possibly because the FDA had only released it after only a 14-dat test. the My doctor in Houston, whom I adore, intervened and they agreed to pay all but the co-pay, which was still going to be $160 for a 14 day supply, Yikes! So I called Aetna and asked if they would do what they call a “tier exemption” as they had done before. That means they’d bump a medicine down in their tiers which would reduce the cost. But since my doctor had already gotten the one exemption on it this year, they couldn’t do a second one. But a very nice lady at Aetna told me that if I could hold on until “open enrollment” in October, I could ask for a tier exemption then. So that’s the plan. I would have been gone on the opiates until that time, but I may as well be swallowing Tic-Tacs.

One more thing. Since they did so little testing on this drug, I figured I may as well conduct my own testing. You’ve heard of the religious group, “The Seventh Day Adventists”? Well I’ve nicknamed myself the “Fifteenth Day Guinea Pig”. Yesterday, I only took one pill in the morning - worked just fine. Then an RN friend of mine suggested cutting the pill in half, taking half in the morning and half in the evening, to keep a blood level up, So far, so good. I really do believe that with 14 days of testing before they pushed this out onto the market, they really don’t know what it will do. I’ve revisited their website a few times since I started taking it. On my first look, there was a brief list of possible side effects. Next time that list had been edited with some new and some from the original list. Third time the list was gone entirely.

I know my doctor hates it when I play free-lance pharmacist, but some times we just have to advocate for ourselves.

 

[Sarah R.]

I TOTALLY understand your issue about trying new drugs when they’re expensive. Yes, my pain was primarily in my lower legs, and was beginning to move to my hands. I’ve probably already mentioned this, (brain holes), but I was already on the maximum dose of Oxy AND Fentanyl and they had quit working, so I was hurriedly making sure my will was in order. The new drug, Journavx cleared the pain in TWO DAYS!!!

I have Aetna Medicare Plus and they weren’t going to pay any of it; possibly because the FDA had only released it after only a 14-dat test. the My doctor in Houston, whom I adore, intervened and they agreed to pay all but the co-pay, which was still going to be $160 for a 14 day supply, Yikes! So I called Aetna and asked if they would do what they call a “tier exemption” as they had done before. That means they’d bump a medicine down in their tiers which would reduce the cost. But since my doctor had already gotten the one exemption on it this year, they couldn’t do a second one. But a very nice lady at Aetna told me that if I could hold on until “open enrollment” in October, I could ask for a tier exemption then. So that’s the plan. I would have been gone on the opiates until that time, but I may as well be swallowing Tic-Tacs.

One more thing. Since they did so little testing on this drug, I figured I may as well conduct my own testing. You’ve heard of the religious group, “The Seventh Day Adventists”? Well I’ve nicknamed myself the “Fifteenth Day Guinea Pig”. Yesterday, I only took one pill in the morning - worked just fine. Then an RN friend of mine suggested cutting the pill in half, taking half in the morning and half in the evening, to keep a blood level up, So far, so good. I really do believe that with 14 days of testing before they pushed this out onto the market, they really don’t know what it will do. I’ve revisited their website a few times since I started taking it. On my first look, there was a brief list of possible side effects. Next time that list had been edited with some new and some from the original list. Third time the list was gone entirely.

I know my doctor hates it when I play free-lance pharmacist, but some times we just have to advocate for ourselves.

Thanks so much, Nanci H! That's such a complete explanation, and I'm sure it was tedious to write. I appreciate your time and energy in exploring the new drug and communicating with us about it.