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

For what it’s worth, my initial presentation of RA at age 62 really looked more like PMR. The hot dog Rheumy i had been sent to was not sure. I didn't have some of the hallmark blood or clinical presentation of RA. She said she was putting her bet on the table and gave me an injection of Humira in her office. And five days later I began to get relief. 6 years later I tested positive for RA Factor.
But I will still occasionally have what feels more like a PMR flare to me. Shoulders, hips, ankles that won't bend, and hands that can’t open a door handle, I typically do a tapering dose from 20mg of Prednisone, calm things down and get off.

I just play the symptoms.

The rheumatologist I am going to now thinks that I do not have PMR but spondylo arthritis. I have been put on hydroxychloroquine and when that didn't work sulfasalazine. I had to have a failed root canal tooth extracted and took Tylenol 1000 mg for pain 3X/day The Tylenol solved a lot of problems. I am wondering what is my diagnosis? I have been searching the Internet and think I have myositis. It is not common, but the symptoms seem to fit.

I took prednisone for about six months for PMR, (my blood test for PMR was 69.9! Normal is 7.4. ) , relief, yes, had a bone density test, not good. Was lightheaded and dizzy all the time.

Tapered myself off prednisone….from the start 15 to 1 …took a couple of months.

Tried several OTC things I heard or read about, worked for about a week, then pain comes back and was excruciating.

A friend told me she takes Tylenol an Ibuprofen daily ….i do now every six hours. Not completely pain free but my days are much better.

Nights are tough. Pain comes back after six hours but, much more doable than before.

glad your off the prednisone. That much over the counter can also be a problem. But doesnt have the same addictive effect. You might need to talk to Dr about Kevzara. If you still have the PMR symptoms. They might need to keep you on a PMR medication . Not sure if your insurance will cover or not.

Has anyone had the IL6 blood test and found it useful? Tell me your experience.

Did you consider you may be having a reaction to coming down off the Prednisone? Had the same symptoms, and was very hesitant to come down any further after 10 mgs. Also, it's not unusual to have more than 1 autoimmune disease at a time so I was told by my doctor. I was diagnosed with PMR, but my current blood work shows ACE, Complement C3, and IGG4 are elevated above the allowed level. Now my sedimentation rate is perfect. Will be talking to my next Wednesday. Not sure if she'll be putting me on Kevzara or not.

Can you help me? I do not understand (my blood test for PMR was 69.9! Normal is 7.4). What blood test are you talking about?

Probably ESR or CRP. I don't know what "normal is 7.4" refers to.. There aren't any direct blood tests for PMR. Indirect tests for inflammation are done and ESR and CRP are sometimes called inflammation markers.
https://www.goodrx.com/health-topic/autoimmune/esr-crp-differences

I never had my IL-6 level checked. However, I'm taking a medication that inhibits the IL-6 cytokine and stopped my chronic inflammation and relieved my pain after 12 years of PMR treated with Prednisone. . I assume my IL-6 level was elevated but now it is reduced by the biologic I take that inhibits the IL-6 cytokine.

Actually the biologic probably caused my IL-6 level to rise rapidly at first before my IL-6 level returned to normal.

Nobody knows exactly how IL-6 inhibition works but it seems to stop my PMR symptoms and allowed me to taper off prednisone.

A theoretical diagram of how Actemra (tocilizumab) works is seen in the following link.
https://www.researchgate.net/figure/Mechanism-of-action-of-tocilizumab-in-RA-bathtub-theory_fig2_221967570
I'm proud to say it only took me a few weeks to understand this diagram. I don't know why my IL-6 level wasn't checked first before starting Actemra.

The same mechanism should be applicable to Kevzara. Here is another great link that I won't take credit for because someone else posted it first.
https://www.pmrandil6.com/il-6-and-pmr/

C-REACTIVE PROTEIN
• View trends
Normal value: < =7.4 mg/L
Value 14.4
C-REACTIVE PROTEIN,

NON-CARDIAC, HIGH

SENSITIVITY [86141F] may
be

appropriate to assess

infections or other

inflammatory conditions but
is not

suitable for Cardiovascular
Disease (CVD) risk

assessment. For CVD risk,
please

order C-REACTIVE

PROTEIN, CARDIAC, HIGH