Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

@tweetypie13

I had a competely different experience when Actemra was offered to me. My rheumatologist said Actemra represented my "best hope of ever getting off prednisone." After 12 years of PMR and prednisone, I had lost all hope of ever tapering off prednisone.

There wasn't any guarantee that Actemra would work for me. Comments on another PMR forum from "self proclaimed patient experts" discouraged me from trying Actemra. The research that IL-6 inhibitors showed positive results for the treatment of PMR/GCA was ignored. This was in 2018 so the research was new. The experts didn't have any personal experience with Actemra but they were opposed to it. They almost dissuaded me from trying Actemra.

Fortunately, my rheumatologist wanted my commitment before he started the process of submitting an authorization request to treat me with Actemra. I didn't think Actemra would be approved so I thought my "commitment" didn't matter. I didn't even know what medication I committed myself to.

When Actemra was approved, I wanted to back out of my commitment because of all the negative comments I received. My rheumatologist didn't twist my arm or anything. His response to me wanting to back out of trying Actemra was, "I wouldn't know if Actemra works or not unless I tried it to see."

I wasn't optimistic that Actemra would work. After 3 months of doing Actemra injections every 2 weeks, I didn't feel any different. I was able to taper from 10 mg of prednisone down to 7 mg.

Since 7 mg was the dose where I usually flared whenever I tapered that low ... I decided to get the "inevitable flare" over with and tapered by 1 mg per week. That fast of a taper was contrary to the advice I received from the experts on the other forum.

In one month I went from 7 mg to 3 mg. I felt awful but PMR didn't flare. I was talking to my PCP when I remembered the endocrinolgist I saw a year or two earlier wanted to see me again IF I ever got to 3 mg. My PCP checked a cortisol level. The next thing I was told was not to taper any lower than 3 mg until I was seen by the endocrinolgist.

@dadcue
Interestingly, after a year my Rehumy never got it thru his head that “I needed a reason” to take more meds. Told him, he did not get it that I am averse to taking even aspirin for a headache.

Good luck on your journey.

@tweetypie13

I had a competely different experience when Actemra was offered to me. My rheumatologist said Actemra represented my "best hope of ever getting off prednisone." After 12 years of PMR and prednisone, I had lost all hope of ever tapering off prednisone.

There wasn't any guarantee that Actemra would work for me. Comments on another PMR forum from "self proclaimed patient experts" discouraged me from trying Actemra. The research that IL-6 inhibitors showed positive results for the treatment of PMR/GCA was ignored. This was in 2018 so the research was new. The experts didn't have any personal experience with Actemra but they were opposed to it. They almost dissuaded me from trying Actemra.

Fortunately, my rheumatologist wanted my commitment before he started the process of submitting an authorization request to treat me with Actemra. I didn't think Actemra would be approved so I thought my "commitment" didn't matter. I didn't even know what medication I committed myself to.

When Actemra was approved, I wanted to back out of my commitment because of all the negative comments I received. My rheumatologist didn't twist my arm or anything. His response to me wanting to back out of trying Actemra was, "I wouldn't know if Actemra works or not unless I tried it to see."

I wasn't optimistic that Actemra would work. After 3 months of doing Actemra injections every 2 weeks, I didn't feel any different. I was able to taper from 10 mg of prednisone down to 7 mg.

Since 7 mg was the dose where I usually flared whenever I tapered that low ... I decided to get the "inevitable flare" over with and tapered by 1 mg per week. That fast of a taper was contrary to the advice I received from the experts on the other forum.

In one month I went from 7 mg to 3 mg. I felt awful but PMR didn't flare. I was talking to my PCP when I remembered the endocrinolgist I saw a year or two earlier wanted to see me again IF I ever got to 3 mg. My PCP checked a cortisol level. The next thing I was told was not to taper any lower than 3 mg until I was seen by the endocrinolgist.

@johnbishop my rheumatologist, after one year of steroid treatment, has claimed I do not have PMR. All my numbers are still slightly elevated and I have recurring symptoms, but she insists I do not have PMR. My pcp, her pa, the hematologist/oncologists all agree I have PMR. Because I also have digestive issues she is blaming all issues on my gut!

I am so disgusted and can’t help but wonder if her dismissing me is ageism. She sent me to the emergency room and I definitely experienced ageism there!

@tweetypie13

Discontinuing medications was the most remarkable result of me being on Actemra which allowed me to taper off Prednisone. I would need to evaluate all the medications that I used to take when I was on Prednisone. Conditions that were a problem when I was on Prednisone gradually subsided, My PCP deprescribed 3 blood pressure medications, atorvastatin, warfarin, famotidine and my opthalmologist stopped Cosopt for high intraocular pressures all within 2-3 years of me tapering off prednisone. Counting prednisone, that is at least 8 medications that I no longer need.

When I was still working as a nurse, I was very aware of the problem polypharmacy of geriatric patients. My awareness was mostly because I needed to give geriatric patients a boatload of medications. I vowed that I would never take more than 5 medications. Unfortunately, prednisone ushered in more and more medications and I was soon taking more than 10.

Take a look at the case study in the following link.
https://www.meded101.com/polypharmacy-case-study-prednisone-nsaids-and-more/
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I don't know what led to what but at the bottom of this guy's medication list is Prednisone 20 mg every day.

The way Kevzara and Actemra work is basically the same. They are classified the same … both are IL-6 receptor blockers.

The chemical structure of Actemra and Kevzara are different so they aren’t identical medications. They work basically the same way. There might be subtle differences but I don’t think one is any better than the other.

The biggest difference is Actemra is FDA approved for GCA and not for PMR.
Kevzara is FDA approved for PMR.

My rheumatologist thinks either medication should work for both PMR and GCA.

@dadcue
Thank you. I am wondering if kevzara is not available to me in 2026 if my doctor would switch me to Actemra. We’ll see. 🤷🏻‍♀️

@caroljeand

Just so you know ... Actemra comes in either a self administered injectable formulation OR it can be ordered as a monthly infusion. So far, Kevzara only has an injectable formulation.

Medicare is quirky but infusions are covered under Part B (Medical Insurance) which usually handles outpatient infusions that are done at an infusion clinic or a "hospital setting" like a doctor's office. Medicare Part B pays for infusions and the medication gets covered too. An infusion can't be done without the medication ... go figure!

Another possibility since Actemra is not patented anymore --- biosimilars exist for Actemra. Think of biosimilars as "generics." Biosimilars cost less and can be substituted for Actemra in many cases.

As of late 2025, there are three FDA-approved biosimilars for Actemra (tocilizumab) in the United States.
Tofidence (tocilizumab-bavi),
Tyenne (tocilizumab-aazg),
Avtozma (tocilizumab-anoh), being the latest to gain approval.

Remember that Actemra and the biosimilars are only FDA approved for GCA but they should work for PMR as well. Doctors can get around the problem of patients not being diagnosed with GCA as a confirmed diagnosis. They can say they are treating "possible GCA" or "presumed GCA" without making a confirmed diagnosis of GCA. There are patients with both PMR and GCA so they can be treated with either Kevzara or Actemra.