Prednisone for over a year along with Kevzara for last 5 months

Not suggesting you do this because I would not wish the steroid on anyone. If your blood markers are good for PMR its just the taper. But many on another site i belong to take half the dose in the morning and half at night. The prednisone has about a 8-10hr life. I used dexamethasone which has a longer life and can go all day. I was off in 6 months. Evening dose can mess with your sleep but the pain can mess with it also.

Thank you for the suggestion. I tried this when I was at the higher dose and unfortunately I had a hard time sleeping. 🙁 I might have to try it again.

You and @pb50 have RA in common.

I was diagnosed with seronegative inflammatory arthritis at the age of 32 and then PMR was added into my mix of autoimmune disorders when I was 52. I understand how it feels when you have multiple autoimmune disorders--to say it hurts everywhere is an understatement. Prednisone made me feel better but long term use of Prednisone made things worse.

I'm now doing a monthly infusion of Actemra (tocilizumab) which is a biologic similar to Kevzara. A biologic wasn't tried until I had PMR for 12 years when I was unable to taper off Prednisone. Even after Actemra was tried, it took another year to taper off Prednisone --- that was when I started to feel better.

Have you tried splitting your Prednisone dose? I did 2/3 of my dose in the morning and 1/3 of my dose in the evening. My starting dose of Prednisone after PMR was diagnosed was 40 mg daily. I wasn't able to get anywhere near 15 mg for 10 years!

I will soon be 70 years old but the battle isn't over. PMR might be in remission thanks to Actemra. I still hurt but not as much.

My introduction to RA at age 62 was seronegative and involved an incredibly acute onset - fine one day, incapacitated 2 days later with weakness and profound pain in shoulders, hips, hands, knees, ankles and feet. I was given a brief course of Prednisone and then put on Humira. My excellent Rheumy said that although the initial inflammatory storm might suggest PMR, there were features she could only make sense of if it were RA. I actually had a response to Humira in five days.

Gratefully i never had to deal with Prednisone to any material extent. I’ve had it for flares now and again but since I experience extreme euphoria from even 20mg, it wouldn't do for me to need more for pain.

I have deep respect for your commitment to weaning down.

Is the hurt you still feel arthritic and only hurt when in motion ? Or does it just start aching in joints for no reason after sitting for a while ? I find sleeping is when this happens …about every 2 to 4 hrs …waking me and taking about 10 minutes to subside ( after much position readjustment )

Motion, still, awake, asleep - for an understandable reason like yard work, or more often for no reason,

Perhaps of interest.
* i have an Adjustable bed - has been a help in adjusting positions
* i have some bags that are flannel and filled with seeds. Microwave a couple mins and it stays warm a long time. I use seed corn because I like the scent. It molds to just about any joint. .

Good luck!!

Hello @marielynn -I'm just curious - how was the opportunity to go on Kevzara described to you ? since you have RA , i assume you have a rheumatologist.

until about 6 pm and then the pain in my shoulders, neck and chest comes back. I find it hard to get comfortable at night because I hurt. < < is it the same as the morning stiffness you experienced with your onset of PMR ? this timing seems unusual. I agree with @tuckerp what are your CRP and ESR levels now ? I had some weird pains in the duration of time tapering from about 8mg/day to 3 mg/day. But blood markers were normal - I made it to 2 mg /day ( 0.5mg month , now increased rate of 0.5mg/2weeks) so the goal is zero by July ! woo hoo . I hope you can achieve that too : )

"I really want to get off the prednisone " < < my understanding is that your rate of tapering off to zero will be enhanced with the Kevzara - does your rheumatologist have other patients for whom this was successful??

The pain I feel is now mostly arthritic pain that can be explained. It was the pain that couldn’t be explained that hurt the most. Pain for no reason was unbearable.

I see many on here many are using Kevzara. I looked up Kevzara and it reduces the Interleukin 6 immune response. Which is linked to inflammation. This would appear to be an attempt to make sure your PMR is not active for a more successful taper off prednisone. But this does not appear to do anything for the withdrawal symptoms of the taper. If you look at all the side effects possible for Kevzara why would anyone want to take this drug if your ESR and SED rate are normal. Seems to me your going to be stuck taking another medication.

The body needs cortisol to function. When you take prednisone for more than a few weeks, your adrenal glands make way less cortisol. If you stop prednisone or taper too quickly, your body won't have enough of the cortisol it needs. Withdrawal symptoms are due to that sudden cortisol shortage.
https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923
The treatment for steroid withdrawal syndrome is more prednisone. Increasing the dose of prednisone continues to suppress the adrenals and continues to cause a cortisol shortage when Prednisone is tapered lower again. Without enough cortisol the body's ability to regulate inflammation is reduced so chronic inflammation continues and flares and more likely.

IL-6 inhibition reduces inflammation but doesn't suppress adrenal function. When inflammation is stopped the need for prednisone is reduced. Less prednisone allows the adrenals to recover and more cortisol is produced ... hopefully.

Sometimes the adrenals never recover and this results in Prednisone dependence. Usually the adrenals will recover if given enough time.