@boomermeg I certainly know your waking up in the night with severe hip pain. Strangely, I don’t cry due to my own pain, but I do cry when others are in pain. I hope you don’t have an internal bleeding issue. I’ve learned that Prednisone is a “go-to” medicine for some types of bleeding disorders. Dr. Megan ( the Prednisone/PMR YouTube pharmacist took Lrednisone long term for an internal bleeding disorder.
Having mentioned that, Prednisone may be a good fit for you.
This is just my opinion from my personal experience with Prednisone and Kevzara, and learning as much as I can from others for my own treatment.
If you do not have any seriously bad side-effects from Prednisone, stick with it only.
(Me, I couldn’t because of the side-effects and I was probably started at too high a dosage. It made me feel like Superman for a few weeks, but also clotted my blood in concert with another prescription drug I was given for a Prednisone side-effect that was horribly and painful, that also clots blood. I ended up with hospitalized for 5 days and have to take Eliquis now as long as I’m on Prednisone.
Kevzara is not a “magic pill” medicine for me. I use it to get off Prednisone (now alternating days of .5mg and 0 mg, for another week to ten days.
Kevzara will allow me to get off of 4 prescription drugs to counter the Prednisone side-effects and the 4 OTC supplements taken at precise times of the day so they don’t interfere with each other. A real balancing act.)
Kevzara, for me, is not as effective at relieving all the pain like Prednisone alone did.
Kevzara works differently and targets Interleukin (IL-6), as you know. I can feel the difference in the way it works. I’ve wondered/considered if I would have to take both if I’m to feel normal again but it’s really not an option. I’m just stuck with some hip pain and slight shoulder pain, but sleep helps relieve both.
Kevzara has a half-life of 21 days, so it takes 6-8 weeks to build up a maintenance amount in your system. (Thus the need for something else in the beginning, like Prednisone or glucocorticoids or cortico steroids…)
For me, I would have remained on Prednisone all by itself because of its total effectiveness at eliminating the PMR pain. It just happened to be “mean” to me in so many other ways.
Prednisone is pennies per day.
Kevzara is $5k per month. If you have good insurance, you’ll pay your deductible the first injection and the rest of the year it costs nothing out-of-pocket.
You insurance will apply for and get the “manufacturer’s assistance discount” of $1k/month. If no insurance, one has to apply on their own for that discount. Crazy, but that’s the way it is in the USA presently.
There are some other IL targeting inhibitors that are being tested, specifically IL-17 and IL-23 proteins. One of which may be FDA approved for PMR soon, as trials are currently underway.
If Prednisone alone works for you and has no ill side-effects, I’d suggest that you just take Prednisone only.
(It may be prescribed to you for an internal bleeding disorder anyway. Just guessing though.)
I would not take an expensive drug that only works just okay vs an inexpensive ready-available drug that works great (provided it causes you no bad consequences.) I just have no choice.
I feel your pain, physically and the mental struggles of a successful for you treatment plan. One that we hope will lead to a drug-free painless back-to-normalcy again.
I wish you the very best of success. You know that. Keep us informed of your status and progress. We all learn from each other.
@stonewheel
Thanks for your reply and sharing your experience. It all helps. For me it was shoulder and upper body pain that woke me up every night. The hips/thighs were involved too but didn't wake me up.
I hope I don't have any ulcer too. It's possible, even likely that the critically low iron saturation was from the inflammation bringing on hepcedin which blocks available stored Iron from being used by the body. The GI Dr. also wants to rule out Celiac disease (which causes iron issues too) and rule out ulcer etc. It was my PCP NP who was initially concerned it might be a GI bleed, but that was also prior to PMR diagnosis. So, unfortunately, the only way to rule out ulcer is Endoscopy and the celiac disease blood tests were negative, but one gave her enough to say a biopsy is only sure way.
I agree about less medications is always better. It's been OK so far tapering from 25 to 20mg, but as some others have mentioned, I'm still on high doses yet. It seems it's the lower dose area (10mg or so) where it can get trickier re flares. With what input I'm getting so far, and my own, I'm getting the Kevzara Rx lined up because I hear Insurance often fights authorization and it can take time. They also might require trying another medication first and failing that prior to allowing it.
Mine is a Medicare advantage plan and any government insurance isn't eligible for a manufacturer discount from what I've read, so that won't help, but thanks for the suggestion.
So, for now, I am just taking Prednisone. I've only been on it since 7/31, so it's early in terms of getting adverse side effects and can still happen but hopefully not.
Thanks again. Blessings.