PMR flare at a drop from 8 to 7 mg of prednisone?

I was down to 7 and had to back up to 8,

Not being able to taper gracefully is a good way to describe it. There was nothing graceful about how I tapered---that's for sure.

Kevzara (sarilumab) was FDA approved for PMR in February of this year---2023.
https://www.the-rheumatologist.org/article/fda-approves-sarilumab-for-the-treatment-of-adults-with-glucocorticoid-resistant-pmr/#:~:text=On%20Feb
and
https://www.ajmc.com/view/sarilumab-indication-expanded-to-include-polymyalgia-rheumatica
I hope Kevzara works for you.

Actemra (tocilizumab) helped me taper off prednisone gracefully. Actemra is FDA approved for GCA.

Kevzara and Actemra target the same inflammation pathway.

Methotrexate has been helpful to the tapering. That is until I hit 7mg of prednisone and now all helll has broken loose. Couldn’t walk over thanksgiving. My c reactive protein had gone down to normal over the last 9 months but SED remained in the 40s. Blood work this week shows c reactive protein now high and SED rate doubled. Very discouraging. Doc trying to get me on the Kevzara but approval is taking awhile. I’m hopeful but frustrated. Doc said two other patients were doing well with Kevzara. They too had proven “resistant to tapering.”

Good morning all - @annemarie74 @barracudacool Can you tell me if you would describe the pain/stiffness in your recent flare ups as EXACTLY the way you experienced PMR at the initial onset ?
I am questioning what is going on with me:

I was just beginning to taper from 7 to 6 mg and have had three 3 non-consecutive days of waking up with sore arms /biceps - I have been doing pilates again have kept up with PT exercises in the pool. So i now can't tell if this is PMR related or not !
But i feel the most telltale observation is that i don't WANT to lift my arms up - i can't put my hair in a ponytail ( and believe my husband cannot put my hair in a barrette - it's pretty funny ! )
In addition , i had blood work done in anticipation of needing that data to help figure this out - my CRP and ESR are currently normal.
Given what others have described in this conversation and elsewhere, I will increase my evening dose and revert back to 8mg total for the weekend and get a message out to my Rheumatologist.
SO ANNOYING ! But anyway - speaking of tapering -- I will attach a nice short review tha mentions a "typical" schedule :
" A typical regimen is reduction by 2.5 mg prednisolone every 2–4 weeks, until reaching 10 mg daily, and then by 1 mg per month until cessation or until symptoms flare. Some patients need a slower reduction of 0.5 mg per month. Tapering of glucocorticoid dose should be guided by clinical symptoms, not by inflammatory markers; thus recording relevant patient-reported outcomes12 "

Has anyone ever suggested that you might have more than PMR going on? Methotrexate worked reasonably well for me too. It worked for me as a "steroid sparer." Unfortunately when I spared too much prednisone all hell broke loose like you say. The hell was worse than PMR only.

I have a variety of autoimmune conditions. My rheumatologist said the folloing referring to my treatment plan, "One medication works for one thing and another medication works for another thing." Unfortunately, I couldn't tolerate or she could not prescribe both medications together. Then the following conclusion was added, "It would be impossible to adequately treat everything"

My rheumatologist stopped methotrexate "due to infections" not because it wasn't working.

I did have a massive flare of something when Actemra controlled PMR. It wasn't GCA. My ophthalmologist still doesn't believe Actemra is optimal for the condition she is worried about more than PMR. My ophthalmologist says I should be on a TNF-inhibitor except it doesn't work well for PMR. I can't have two different biologics ... I can only have one or the other but not both.

Hey there..According to my doctor I have been a bit outside of the classic symptoms since starting this back in December last year. My initial symptoms were pain in both legs, hips, lower back, and an inability to walk without dragging my legs. Legs felt painful and as if they were encased in concrete. Several months ago I added a bit of pain and stiffness in my shoulders but nothing big. So now I am flaring and it is once again in my legs. Not as bad as last december but it came damn close over Thankgiving when I was trying to navigate the airport.
Are your arms and biceps where your pain initially started.

Yes my doctor did because he wasn't convinced it was PMR at first but I've been tested for everything else and PMR is the only diagnosis that makes sense. Why do they keep testing me for Lupus!!!??? LOL. Doc also has two other patients now on Kevzara who followed my pattern using methotrexate. Worked great until I got down under 10mg of prednisone and then not so much.

I was dragging my legs after having an infection while on methotrexate and prednisone. It was an "acute onset" neurological change along with some of the worst pain imaginable.

One thing led to another ... antibiotics first and then an MRI which revealed severe spinal stenosis of my lumbar spine. A neurosurgeon was consulted who said I would need emergency surgery which he would do except for all the prednisone I had been on. The infection needed to be treated first.

The surgeon was also concerned about osteoporosis. He wasn't sure there would be enough "good bone" to hold all the hardware that would be needed to fuse my lumbar spine. I had a Dexa scan done that was "normal" except for "too much bone" in my lumbar spine. The surgeon didn't think there was that much good bone and much of the bone would need to be removed anyway.

I protested and said "I didn't know that I had a bad back." I admitted to years of severe back pain BUT prednisone always relieved the pain.

I still have not had the emergency surgery. The incident happened nearly 10 years ago. I took 60 mg of prednisone and the pain stopped. The neurological changes improved but I never had a full recovery. Both of my legs are weak, numb and I have foot drop on the right. I can still walk but not for any distance. I use a rollator for distance and to be able to sit down when I need to.

thanks for your question -- i noticed symmetrical stiffness in both shoulder and hip girdle at the onset . When on sub-par dose of Prednisone (15mg), the shoulder stiffness lingered more than the legs - so for example i could get out of bed and take a walk while waiting for hte arms/shoulders to get back to normal range of motion. Maybe right now "soreness" is a combination of Pain AND stiffness ! LOL.

This description from https://www.uptodate.com/ is where i first read about the "gel phenomenon"
"Morning stiffness and the gel phenomenon – Gelling, or stiffness with inactivity, is a hallmark of synovitis in the systemic rheumatic diseases in general, but in PMR, this phenomenon can be notably severe. Morning stiffness in PMR is invariable; its absence excludes a diagnosis of PMR. In untreated PMR, morning stiffness can last into the late morning or afternoon. After inactivity, such as after a longer car ride, stiffness can recur. Nocturnal pain is common.

●Functional limitations – Proximal stiffness can result in difficulties with activities of daily living, such as pulling on a shirt or coat, hooking a bra in the back, donning socks and shoes, or transferring from the supine or seated position to standing. The intensity of the gelling phenomenon, coupled with proximal stiffness, can be such that patients may require assistance with morning dressing."

My initial symptoms of PMR mostly involved my shoulders. I couldn't lift my arms to do anything myself. Someone could lift my arms for me and it wouldn't hurt so much. It started in one arm first because I would carry my bad arm with my good arm. The asymmetry was only for a day or two and it wasn't too long before I couldn't lift either arm.

It took time to be diagnosed with PMR. I had a 20 year history of reactive arthritis so the first assumption was that my shoulder pain was a flare of reactive arthritis even though I never had shoulder pain before this time.

My ophthalmologist prescribed a massive amount of prednisone for every flare of uveitis which is "associated" with reactive arthritis. The problem was --- I would "self medicate" with leftover prednisone prescribed for uveitis anytime I had the pain caused by reactive arthritis. This went on for 20 years until I was 52 years old. I never had a primary care doctor let alone a rheumatologist. I was a nurse so I took care of myself. I listed my ophthalmologist as my primary care doctor.

When PMR set in, my wife called her primary care doctor because she didn't want to help me get dressed anymore and things weren't getting any better. My wife's primary care doctor thought I was an idiot and referred me to a rheumatologist.

A comedy of errors ensued because reactive arthritis isn't treated with prednisone. I was begging any doctor who would listen for prednisone. I was praying for uveitis to happen so my ophthalmogist would prescribe prednisone.

Eventually a couple of rheumatologists agreed that I had PMR in addition to reactive arthritis and uveitis.

A primary care doctor apologized to me after PMR was diagnosed. He said when he first saw me, he thought I was a "crazy person" who wanted prednisone. After my first visit he decided I wasn't crazy ... and he thought it was PMR then but he was listening to my rheumatologist. The rheumatologists were telling him to limit prednisone.

It took a few more months before the rheumatologists to come to the same conclusion about having PMR. I couldn't believe it either. I asked what happened to reactive arthritis. My rheumatologist said it was still there except now I had PMR too.