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

It took time for me to get used to the idea of having PMR along with everything else. What confused me the most about PMR was that I couldn't taper off prednisone until 12 years later when tocilizumab (TCZ) was tried.

I could always taper off prednisone in a month or two for flares of uveitis. Prednisone quickly relieved the lower back pain that I associated with reactive arthritis and remission was achieved quickly.

Prednisone also helped trigeminal neuralgia (TN) despite what a neurologist said. After surgery was done to relieve the compression on my trigeminal nerve, a neurosurgeon said prednisone was likely helping the inflammation and swelling in the area near my brain stem. TN wasn't autoimmune but "systemic inflammation" made it worse. Yes ... there were multiple areas being attacked and the pain was diffuse but not every pain was autoimmune related.

In any case, TCZ was prescribed for PMR and I tapered off prednisone in a matter of months rather than years. However, TCZ didn't prevent a flare of uveitis. My ophthalmologist wants me on Humira (Adalimumab) but I choose to remain on TCZ. It was only one flare of uveitis and 60 mg of prednisone always takes care of that problem.

My primary care doctor is glad that I'm off prednisone. He was getting tired of treating all of the prednisone side effects. Even more things were unregulated while I was on chronic prednisone. Those side effects are diffuse too.

Alternatively an Interleukin-6 inhibitor is a good choice.
A rheumatologist would be the
physician with the most experience with prescribing in your situation.
Learn all you can about an anti-
inflammatory diet routine.

My Ortho is actually who recommended that I see a rheumatologist so some of them do have appropriate info. My insurance requires a referral to a specialist and my GP and I had to have several lengthy discussions before she ran some bloodwork. She didn’t make the referral until she saw my Sed rate and CRP which were extremely high. I probably would never have received the referral if those had been normal like others with PMR have reported. Education on PMR/autoimmune is likely needed for all of our medical professionals.

Said predisone is the treatment and celebrex and can't take that as well as multiple muscle relaxers and can't tolerate them either 😪

I like a lot of posts I’ve read I was surprised to learn I had PMR. I presented to my Internist with weight loss, loss of appetite, fatigue, low grade fever, and pain in my shoulders, thighs and hip muscles and some pain in my lower abdomen. I’m 78 and those symptoms prompted her to order a cat scan. It came back with nothing serious so her attention turned to PMR. She was familiar with the condition and knew the protocol, and put me on a prednisone regimen that day, April 24, 2023. I’m a healthy body weight, and I exercise regularly, (she advised me to cut back on walking 5-6 miles a day and gradually work back up) I’ve found it’s a delicate balance on not exercising too much. I’m doing well on the step down regimen of prednisone, but from reading posts today, I need to drink much more water, which will not be an issue. I have a positive outlook and while this may be a long haul, and my PMR may occur more than once, I’m here for it!

I was diagnosed in 2021by a Rheumatologist. I live in Canada and there is difficulty in getting specialist in our area. I worked n Health Care for 32 years and had been diagnosed with Arthritis in my Spine and Knees. Blood work did not indicate PMR. When I finally got a diagnosis we figure I had both PMR and Fibromyalgia. . Totally agree some of our Doctors need to think outside of the box. I wish you well on this interesting journey!

Glad to hear that your ortho recommended further testing. I totally agree that more education on these auto immune disorders is need for physicians across the board.

Has anyone used Voltaren Arthritis Pain for PMR? The pharmacist suggested it. Thanks.

Welcome @susang222, I’ve used Voltaren cream for arthritis pain and it helped some but didn’t do anything when my PMR was active.

Is your PMR being treated with prednisone?

Interestingly, my GP was the one who tested me first for PMR. I think she was tired of me going back repeatedly over the past year about the pain which was increasing. She tried to get me into a rheumatologist but no one would add an extra patient. Something needs to be done about that!! I’m in Saskatchewan Canada. So I suggested my husband’s internist. She has been a godsend!! It has been a bit of a learning curve as well as trying to accept this diagnosis. But one foot in front of the other, as they say! Who ever they are!!😁Im just relieved to have some respite from the pain, not looking forward to all the side effects of prednisone, but am happy to be able to move again!