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

I have had PMR for over 1 1/2yr.
Came on suddenly. Got up one morning & could not walk.
Had labs. Was put on Prednisone. Could not take that.
So I have been on Actemra infusion once a month & it helps. Theresa

@gem3850
I had al the symptoms of PMR but my rheumatologist told me that she could only give a diagnosis of PMR after a PET scan where you can see inflammation in almost every joint area. Which was the case..
Then she put me on 15mg prednisolon 2 weeks ago. Now I still have sore/weak wrists and fingers. Maybe you can ask to get a PET scan too? I live in Belgium.

I was diagnosed with PMR by primary care doctor in 2014.
It flairs several times a year, prednisone takes care of symptoms but just heard about Kevzara. I am 79 years and am in otherwise good health. Take yoga, walk outside, and active overall.
But my hair is falling out and I have moon face and would LOVE to say goodbye to PREDNISONE. What do we know about Kevzara? Does it only treat PMR or can it treat other problems. Apparently only a Rheumatologist can prescribe it. Thank you

@predniso141 There are quite a few members who have shared their experience with Kevzara. Here's a search of Connect listing the different discussions and comments - https://connect.mayoclinic.org/search/.

@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!

well I am completely frustrated, She has ordered a MRI of the abdomin and brain……which is next to impossible to schedule!

I will have one in March but I need a good rheumatologist!

@predniso141
I, too, am 79. Been on Kevzara 41 weeks, love it. Did not know it would help me get off prednisone (minor point Dr forgot to mention so I fought it).
It did help. Been off Prednisone 20 wks and take no other drugs except Kevzara shot. I do take Tylenol for arthritis if it will be a physically active day (hike, bike, golf etc).
Check out the Kevzara website. Medigap pays for it, after I cover my annual deductible. It takes abt 10-12 weeks to kick in. Good Luck

@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.

@tweetypie13 wow. Thanks for that encouraging news about your journey!! Fingers crossed that my rheumatologist will help me like yours did.

@predniso141
Ask for it, and everything else you hear or read abt. You must be proactive.