PMR without ever taking prednisone

Posted by bren2023 @bren2023, May 20, 2025

Is anyone here living with PMR without ever taking prednisone or any other pharmaceuticals ?
I am still trying to get a diagnosis but I have all the symptoms of PMR but the labs don't show it. I have flare ups that are really bad for weeks and then at times 50% better for no reason. My pc doctor said "no that doesn't happen with PMR" but she has no idea what I do have. I have a confirmed by biopsy auto immune condition of the scalp called lichen planopilaris that was treated with steroid oil.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Profile picture for cyndiefromnc @cyndiefromnc

@loeloe No it is not the case for everyone.
I am a runner of 52 years. I eat extremely healthily. Lift, babysit a grandchild, and took no drugs up until last March. I refused prednisone for two weeks despite not being able to walk. This disease comes on fast and furious for some of us.
After 2 weeks of not walking, I finally took prednisone and within 24 hours ran 5 miles.
I think it is wonderful that you avoided prednisone. But that's not possible for everyone. I'm weaning. I'm in pain every single day. But I'll get tthrough it just like tthe others.
One thting we all have in common: we are tough.

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@cyndiefromnc
True words. Have you tried OTC Tylenol for Arthritis occasionally for relief? Works for me on strenuous days…hike, bike golf.
Keep up the great work.

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Im seeing the doctor this morning. I’ve had many of the terrible pain associated with PMR for 6 weeks. No hip or leg pain, extreme pain in my hands, I do have osteoarthritis but never pain like this.
My blood tests are normal.
Last night I slept like a baby and no pain this morning.
Im thinking of starting prednisone for fear of giant cell arteritis which killed him after a very long illness.

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According to my PCP, some cases of PMR simply do not show up in the blood work. When that is the case, the diagnosis is made by eliminating other possible conditions and by noting the patient's reaction to prednisone. If prednisone brings almost immediate relief that can be a diagnostic for PMR, even if your bloodwork does not show PMR>

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Profile picture for cwbf @cwbf

According to my PCP, some cases of PMR simply do not show up in the blood work. When that is the case, the diagnosis is made by eliminating other possible conditions and by noting the patient's reaction to prednisone. If prednisone brings almost immediate relief that can be a diagnostic for PMR, even if your bloodwork does not show PMR>

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@cwbf There is not a blood test that "shows PMR". PMR is a default Dx, meaning that if it is not anything they can test for and the tests and/or pains are consistent with PMR then a Dx is considered appropriate and treatment for PMR is initiated. Inflammatory markers are very, very general tests - they do not pinpoint any problem that causes inflammation, they simply say that inflammation of some type is active in your body. In reality PMR could be one disease or many, the medical world really does not know what it is or if it is just one problem.

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Please let me know if I am wrong. I thought that PMR was related to IL6 sensitivty?

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Profile picture for jabrown0407 @jabrown0407

@cwbf There is not a blood test that "shows PMR". PMR is a default Dx, meaning that if it is not anything they can test for and the tests and/or pains are consistent with PMR then a Dx is considered appropriate and treatment for PMR is initiated. Inflammatory markers are very, very general tests - they do not pinpoint any problem that causes inflammation, they simply say that inflammation of some type is active in your body. In reality PMR could be one disease or many, the medical world really does not know what it is or if it is just one problem.

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@jabrown0407 Yes. Thank you. I think we are saying the same thing.

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Profile picture for suetex @suetex

Please let me know if I am wrong. I thought that PMR was related to IL6 sensitivty?

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@suetex PMR causes IL6 or maybe it is that IL6 causes PMR. IL6 is a type of inflammation that elevates when PMR is a problem. I have been researching inflammation types because up until recently I did not realize there were multiple types. There are more types than I can count - little did I know.

Apparently IL6 inflammation is one that is a big portion of PMR, thus the IL6 inhibitors like Actemra, Tyenne, and Kevzara.

Based on my less than scientific research there are several different types of inflammation involved with PMR. It seems that they feed off each other, so it looks to me that if they shut one type down (IL6) then the other types cannot sustain the inflammation, all types appear to be needed. I am not an expert, and I certainly do not want anyone to think of me as one on this topic.

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Thank you for making sense out of a muddled topic.

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Profile picture for jabrown0407 @jabrown0407

@suetex PMR causes IL6 or maybe it is that IL6 causes PMR. IL6 is a type of inflammation that elevates when PMR is a problem. I have been researching inflammation types because up until recently I did not realize there were multiple types. There are more types than I can count - little did I know.

Apparently IL6 inflammation is one that is a big portion of PMR, thus the IL6 inhibitors like Actemra, Tyenne, and Kevzara.

Based on my less than scientific research there are several different types of inflammation involved with PMR. It seems that they feed off each other, so it looks to me that if they shut one type down (IL6) then the other types cannot sustain the inflammation, all types appear to be needed. I am not an expert, and I certainly do not want anyone to think of me as one on this topic.

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@jabrown0407
The immune system is fascinating the more you read about it. Inflammation gets a bad rap when the immune system goes haywire when we have an autoimmune condition. Inflammation is a good thing as long as the body regulates it with a hormone called cortisol. I finally reached the conclusion that I was foolish to think that I could regulate my inflammation with prednisone. I thought that I knew how to take prednisone and taper off again. I eventually had to concede that I had no idea what I was doing when I took prednisone.

I have moved on from cytokines like IL-6 because I will never understand cytokines. Some are pro-inflammatory, some are anti-inflammatory and some are both. There is a communication network where all these hormones and cytokines “talk” to each other and to respond appropriately as necessary. There was no way to take prednisone only when needed and at an appropriate dose and time.

My body used to regulate my inflammation and cortisol levels but without me knowing. My immune system kept me very healthy too until I was diagnosed with PMR and took prednisone.

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Profile picture for robinleslie @robinleslie

Im seeing the doctor this morning. I’ve had many of the terrible pain associated with PMR for 6 weeks. No hip or leg pain, extreme pain in my hands, I do have osteoarthritis but never pain like this.
My blood tests are normal.
Last night I slept like a baby and no pain this morning.
Im thinking of starting prednisone for fear of giant cell arteritis which killed him after a very long illness.

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@robinleslie make prednisone your LAST choice…ALEVE does wonders.

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