How were you diagnosed with PMR ? How are you currently managing?

@martyn

My rheumatologist didn't seem to mind if I "experimented" a little bit as long as my prednisone dose stayed "relatively stable" and the overall trend was a gradual decrease in my dose. She didn't like it when I increased my dose without telling her which I confessed to doing more than once. Pain is the devil that makes you do things you know you shouldn't do.

I would recommend not experimenting in the wrong direction just because someone on the internet might tell you to increase your dose. Those people can't do face-to-face visits, order labs and other tests to try to figure out what is going on. I think it is always better to work with your doctor and hope for the best.

All my doctors "encouraged me" to stay active as much as possible.

I was diagnosed with PMR/GCA in July 2024. Prior to this, I was an extremely active 68 yo. I was always going 110 mph. My symptoms began as extreme fatigue. Then, they progressed to bilateral pain in my quads and hamstrings. Felt like I over did the squats at the gym! Then the headaches began. This all occurred within a couple of months. My PCP ordered bloodwork for CRP and ESR. She consulted with a rheumatologist that day and due to my headaches, I began treatment for GCA with 60 mg. of Prednisone. I was on that doseage for 6 weeks. The Prednisone took care of the pain, but I had a number of side effects that you could count on two hands.

Fast forward to Jan. 2025. I was tapering, but had a flare at 10 mg. My rheumy put me on monthly Actemra infusions, which I am still on today. I believe that I would have been on Prednisone longer, if not for the Actemra. I tapered off completely in Nov. 2025.

Since getting off Prednisone, I have been diagnosed with inflammatory and degenerative arthritis. My Ortho did an ultrasound of every join from my fingertips to my shoulders, due to the pains I was having. I started taking an NSAID called Relafin. I don't like taking it, but it helps with the pains that the Actemra doesn't seem to control.

This week, I began microdosing a GLP-1. There are studies that show, it helps reduce inflammation. My rheumy agrees with the studies. Since, it's an 'off label' use, a doctor cannot prescribe it. The dose is half of what GLP-1 patients start on. I get it from a 'medical spa' in my town, that an RN runs. There is also a doctor on staff.

PMR is a long journey and I don't think it ever ends. We just have to find ways to manage our symptoms. Staying active is key. This is a great support group and I don't think I would have made it to this point, without them.

In February of this year I started having pain in my one leg, which I put down as a strain caused by pickleball. After a few weeks the other leg started hurting and within a few weeks I was having pain in my hips radiating down my hamstrings. I went to my chiropractor and after one treatment nothing changed. When I went to see him again he referred me to an ortho doctor he knew well that specialized in spines. He ordered blood tests which came back positive for PMR indicators. He put me on 20mg of Prednisone and I had almost immedate relief. My primary Doc referred me to a Rheumatologist in his practice who has had me tapering from 20mg, currently at 7mg. My last blood work a couple weeks ago showed my inflammatory markers were normal and she reduced my tapering from 1mg every month to 1mg every three weeks.

My question to her was if my inflamation markers remain normal through the end of the taper will I be in remission? After following this thread and hearing everyone elses stories it seems impossible to be in remission within a year. Thoughts?

@dadcue thanks! I'm going to ask for 1mg tablets to enable some flexibility as chopping up 5 mg tablets into fractions is tricky! I agree about not upping the dose just because of some aches and pains. I've heard people talk about going up by 5mg if you have a cold or toothache or even 'going on vacation' whicb seems crazy to me. After the pain I endured right at the beginning I feel I have a realtively high threshold....I'm more concerned with the adrenals kicking back in quickly when I hopefully get down the dose to 6 and below. What's your opinion on that?

@martyn

"I've heard people talk about going up by 5mg if you have a cold or toothache or even 'going on vacation' which seems crazy to me."
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I completely agree but I was guilty about taking a significantly higher dose when I was at Yellowstone National Park. There was hiking involved at the most incredible place on earth in my opinion. The extra Prednisone made it even more incredible because I was able to move freely and do whatever I wanted without any pain. The non-prednisone using people with me couldn't keep up with me. It was a great day and I have no regrets. Had I not taken more Prednisone, I might not have done anything that I couldn't do by sitting in one place somewhere. With more Prednisone, I had energy to spare.

The Yellowstone experience happened soon after PMR was diagnosed. How I felt that day made me want to try that again but that was the devil telling me that. I told my rheumatologist about it and she was glad that I had a good time but she cautioned me about doing it again.
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I wouldn't take more Prednisone to be able to do a 50 mile bicycle ride. The rolling hills were like mountains. I couldn't keep up with my brother that day. He doubled back and found me lying in a ditch and said "there was something wrong with me."

I don't remember how I got home that day. I told my primary care doctor about an irregular pulse so he did an EKG. I had a cardiac arrhythmia and left ventricular hypertrophy (LVH). It was inexplicable but later my blood pressures were found to be randomly in excess of 200/100--- sometimes my BP was extremely high as soon as I woke up in the morning.

Prednisone can dysregulate many things and you might never know it. An endocrinologist discovered how out of balance my hormone levels were after Prednisone was discontinued. Prednisone replaces the hormone cortisol that regulates other hormone levels. The body tightly regulates the amount of cortisol that is produced by the adrenals. Too much and too little cortisol is not good. The same is true for Prednisone.

Cortisol is responsible for regulating your body’s stress response, blood pressure, metabolism, and immune function. Since prednisone replaces cortisol, it can cause a domino effect across the entire endocrine system.

I just hope someone can learn from my mistakes. There isn't a reliable way to know how much prednisone you should take and your body won't always let you know.

Adrenal insufficiency might be a hurdle to overcome but it isn't insurmountable most of the time. As long as your adrenals are ready to produce cortisol to replace the Prednisone, you shouldn't have too much of a problem. My understanding is that duration of Prednisone use mostly determines how long it takes for the adrenals to recover.

You will have to think differently about taking more Prednisone for niggles of pain. I wasn't sure what niggles of pain were until I found this guy. I did know that my PMR pain was not a niggle. You probably shouldn't take more Prednisone for niggles which I have heard too.

It isn't an either/or solution. Both conditions need to be met but cortisol levels aren't checked very often. My endocrinologist said cortisol levels aren't reliable so that is why they aren't checked. She added that she would expect anyone on long term Prednisone to have some degree of adrenal insufficiency. She relied on my symptoms more than my cortisol level. If it is Prednisone induced adrenal insufficiency then it is treated by trying to discontinue Prednisone but that isn't easy to do. Any amount of Prednisone will suppress adrenal function to some degree and trying to stop Prednisone will cause some pain. There is no way around it that I know about.

PMR being in remission and a good cortisol level probably won't happen at the same time. My endocrininologist said I needed to stay on 3 mg for as long as it takes for my cortisol level to improve. That was the only time I was told that I shouldn't try to taper lower. I needed to stay on 3 mg and wait for my cortisol level to improve.

My endocrinologist flat out told me to expect "some pain." She said I had to resist the urge to increase my Prednisone dose unless it was absolutely necessary. It was hard to know if it was necessary or not but increasing my dose wasn't going to make it easier for my adrenals to recover.

I wrote about my PMR journey several months ago after finally being diagnosed.. it took 10 months of blood tests before a rheumatologist finally figured it out. I think putting up with the pain, which kept changing and moving around, and trying anti-inflammatory diets, cutting out alcohol and certain foods, different vitamin therapies, psychological and spiritual introspection, and acceptance... I was in pretty good shape when he ordered prednisone. I'm glad he started with only 10mg... I felt like a new person, or perhaps my old self, almost immediately! I stayed on the first month to feel good as I took a vacation, then when I was about to start the taper... a weird, debilitating pain in the hip and low back. So I stayed on and it took about 3 weeks to feel better. Stopped pickleball, wore a back brace during that time. It finally stopped and I started the taper. I go down 1 mg every two months. Today I started doing 6. I'm trying to stay positive that my body has "remembered" how to be healthy, my inflammation #'s are all normal, as are my thyroid. I really want to be off prednisone. I'm 72 in a few weeks, already have some glaucoma and osteopenia so I don't want to aggravate those conditions. I can handle a little pain.. now that I know what this is.

I really think changing my attitude to "just stay in bed and relax" if it's a bad day is better than the panic of "what's happening". I've learned so much on this site... thanks for sharing everyone,

@lhk2 Not impossible. It takes some will power. 6 months to remission and almost 7 years stable.

Hi to ajf1950 and all you kind people who responded.
I too have recently been diagnosed with PMR due to unexplained extreme pain in my thighs, much worse at night. Getting out of bed when I don't think it's going to be productive is always positive, however, as the pain disapates as I start to move around, but it increases over the day.
My CRP was normal and ESR at highest normal level so PA ran antigen blood work. While waiting for the results I started with a new physician, a geriatrist, and told her the PA suspected PMR. After exam and discussion, dr agreed and started me on 10 mg prednisone which had an immediate positive effect. Depending on my pain level I now take 2.5 to 5 mg every day. The bizarre thing is lab results later came back positive only for speckled DNA, which is not an indicator for PMR. Actually, none of the antigen tests can diagnose PMR, if I understand it correctly, so I was then quite confused as to what was wrong with me if it's not autoimmune (but terribly relieved it wasn't lupus, RA, etc.). Dr. said PMR is poorly understood, especially its cause. She said in my case (and assured me I am not unusual), the clinical picture is just as valid as the test results and will continue to treat it as such.
A few days later I ran across an article by Dr. Dan Baumgardt, a neuroscientist from Bristol, England, who wrote an excellent article providing a thorough explanation on PMR being an inflammatory disease rather than an autoimmune condition. Not being an expert, all I can say is that the article made LOTS of sense to me and I now understand PMR so much better. If any of you wish to read it, type:

I'm a GP - these are the signs your body has chronic inflammation

into your browser. It is all about PMR.
I refuse to succumb to hopelessness, probably because I was diagnosed early, and I am deeply grateful that it's not something worse or untreatable. However, I feel deeply for all of you who are suffering at a much deeper level. Take care of yourselves.

20mg prednisone doesn't work for everyone with PMR. It took 25mg prednisone to relieve most of my symptoms and I still had residual shoulder pain. I was also diagnosed with SMM two months later thanks to my rheumatologist doing very extensive blood work to make sure I didn't have multiple issues and then sending me to a hematologist-oncologist.

I was diagnosed 35 years ago and have been on and off prednisone (P), mainly on. Currently I am on Kevzara and 2.5 mg P. My platelets are dropping so I am not sure how long I will be on Kevzara.