Off Prednisone but still feeling new type of pain

@noti that’s wonderful. Did you suddenly feel better while on or off prednisone?

@abbeyc
Symptoms started Jan 2023, diagnosis April 2023. Prednisone of course. Could not get below 8mg. Dr started me on Kevzara April 2025. Self tapered off prednisone by 7/15/2025.
Today 5 months off Prednisone and have not gone back, no reason to.
Today 19 Kevzara shot, 41 wks on Kevzara, taking it every 3 wks.

“Suddenly” is a hard question. I go thru moments of improvement. As I said, those moments become longer , and the next stage is “an another step up in improvement “.

Have a wonderful holiday and great NEW YEAR, I plan to.

@tweetypie13

I'm jealous you started Kevzara relatively soon. I was on Prednisone for 12 years before a biologic was tried. A faster taper off prednisone was "suddenly" possible but it still took me approximately a year to taper off prednisone.

At one stage I was tapering at a rate of 1 mg per week until I reached 3 mg. At 3 mg of prednisone I was instructed to stay on 3 mg for 6 months while I waited for my cortisol level to improve.

PMR improved rapidly but it was my cortisol level that didn't suddenly improve. Even after I discontinued prednisone I had "moments of improvements" followed by not so good moments. My overall health improved and trended up but it waxed and waned for another 2-3 years after Prednisone was discontinued. After I was off Prednisone for 5 years it seemed like my health might be as good as it gets.

I started my biologic on January 1st, 2019 so the NEW YEAR has a special meaning to me. New Year Day of 2019 ushered in a dramatic improvement in my quality of life. Every year since then has shown steady improvements but I still have an occasional bump in the road on my PMR journey. I still get new types of pain that surface but PMR is still in remission. I have never had a complete relapse of PMR which was a characteristic when I took Prednisone.

@abbeyc
I started to really feel better at least a month after I stopped the prednisone. Initially I felt almost as bad as I had at any time during my taper, but I decided that it was a withdrawal problem and that I would try to ride it out. I had a few incidents that caused a lot of stress, and I actually think that they jump started my adrenals, due to the amount of adrenaline I was blasting myself with.
The first incident was a fall.
The second was coming home to a plumbing emergency, which took a day to resolve.
The third was having some sort of food reaction that caused me to become dizzy and vomit (a lot) after a hot shower. That caused whatever adhesions that were impeding the range of motion in my upper arms to suddenly loosen up. After that I was able to do a lot more and start pushing myself more in PT.
I do not recommend that anyone try this at home!
I still take Tylenol, but I had my most recent one 16 hours ago and I don't think I would have noticed if I hadn't been writing this.

@dadcue
What a journey…..we all seem to have a path. Thank goodness for this group and our exchange of information. It has been a savior for me. Wish I had looked for you all/a group sooner. Not something our Dr.s do.

I’m glad to hear you are on the “other side” at last. And hope it continues.
I also believe it is the exercise, minor or major that is a blessing for piece of mind.

I ask others of us to continue to contemplate when “over the speed bump/ on the improvement side”. That means a lot and I still learn.

Thank you

@tweetypie13
You had a good doctor getting you so quickly on Kevzara.
Is PMR in remission? For how long will you stay on Kevzara?

I was told I had developed a weakness in my muscles due to prednisone .If I am correct the doctor called it cortico steroid myopathy. My legs were very weak . It was so painful to get up from sitting position and forget about getting up from the floor. Lyrica caused swelling. I started Cymbalta. Don’t think it worked for pain but it made me a calmer person. Went to PT which helped a lot mainly because it made me continue to exercise in between PT sessions . Leg strength is better . Markers are normal . On Kevzara for 2 years I am tapering off it. Taking Kevzara every 4 weeks with no new PMR side effects . Only problem my neck pain that had totally disappeared when I was on prednisone returned with a vengeance two years ago after I stopped my last prednisone pill. (.which is a miracle pill )
I refuse to get off Cymbalta it means I can avoid therapy
I have been on private insurance though close to 80 , I have to go on Medicare with a medigap in 3 months. Kevzara is not covered . That is main reason I am tapering off it but happily it looks like my PMR is in remission

@abbeyc
Merry 🎄to you too.
I have no idea when my Kevzara will be stopped.
I was almost a year before Kevzara started, however…..
The Dr. wanted me on it 6 months sooner and I would not let him.

He did not give me a reason to put “another drug” in my body, and I have an aversion to taking drugs, let alone for no reason.
I consider that a major negative for the Dr.
He neglected to tell me the important fact that it would help me get off prednisone sooner.
As for being in remission…..maybe….wont really know until I am off the Kevzara for a time. I can manage the “issues” that arise with my “functional movement specialist “.

@tadatada1
My Kevzara is covered my medigap . And the Kevzara company has some $$$ offers on the website.
Hint….ask for a “vacation dose” now, as in…..”I am going on vacation (traveling) for 2 months and need it ahead of time”. My pharmacy/prescriber had it approved easily. You may not need it, but you will have it as you switch over insurance.
Lastly, my neck (and clavicle) issues are being relieved/resolved with TVT, targeted vibration therapy, that my Trainer uses on me.
Good luck

@tweetypie13
PS: keep up the exercise…..I am 79 and live by it daily. My savior, if nothing more than piece of mind.