PMR, no drugs?

yes. Normal. I had started prednisone prior to seeing a Dr. My wife was on dexamethasone for cancer. By time I was able to see a rheumatologist my sed rate and Crp were upper normal. My HSCRP was off the charts but Dr would not necessarily associate that with PMR. Although I found him plenty of supporting data that HSCRP can be an indicator. Mayo Rhumy agreed after all the testing that I had PMR and only PMR. Some have various other auto immunes pop up but that's all that showed up for me. I went from 20mg to start to 10mg in 2 weeks. I tried 5mg but pain returned so I stayed at 10mg for 5 months. Then went to 5mg. Slight pain but manageable and then went to 2.5mg and then zero over the next couple weeks. I had 2 flares over the next year that I treated with a 5 day pack of prednisone. Both were gone. Nothing in the last 3 yrs.

One day Last October 2025 I woke up and couldn’t roll over to get out of bed. With help I did get up and could walk about but was unable to bend it lift. It was shocking! I’d had a traumatizing year or two, but I didn’t yet attribute it to this debilitating morning that I woke up and my body stopped working.
GP says it’s PMR and I see Rheumatologist. I was 3 months away from being 65 and knew nothing about PMR, had never experienced anything like it, and had never even heard about it. Started 10 mg Prednisone and was instantly cured and started on reducing doses down to zero in 8 months. During that time I learned everything I could and grew to hate PMR and Prednisone. So I tapered. The disability returned but wasn’t too too serious. I’m managing. I manage and do not take anything for it. I have moderate discomfort and weakness that moves around in my body from shoulders to knees to fingers to hips to even feet and eyes. I’m not treating my PmR. I can walk briskly, can do stairs carefully, I really enjoy swimming and it took me months to be able to actually rotate my arms to do the crawl stroke. I read people do keep a stash of prednisone in case they want to treat their pain or immobility, but I want to stay med free. I wonder if inflammation damages my body from the difficulty getting moving and still don’t want to take Prednisone.
I appreciate I have no pain when I’m not moving, but one of my worst symptoms and complaints is how disabled my legs are when I first stand up from sitting or driving. I stand and the legs from the hips to the ankles take a moment to get strength. It’s weird but I’m thankful I’m moving about 80-90% normal and not taking any medication. I don’t have any lingering pain, just a lack of strength and a tightness and deep discomfort upon getting everything going. I’m motivated not to take meds so I have to gently work my mobility back into play each time that I’m inactive for a period of time. Also I’ve tried to decipher if any foods, too much alcohol or zero, over exercising or deep relaxing techniques, etc etc, if anything makes a difference…and it doesn’t! So I’m living my best life. Can’t beat stress because there’s a lot to deal with in life but otherwise I guess I have to accept I have an inflammatory condition. 🌹

@pawprintpeg Make sure you know the symptoms of GCA. I have both, and you have to get treatment for GCA. Otherwise you can lose vision, have a stroke, etc. Google says 15 - 20 percent of people with PMR will develop GCA.

You may have GCA as well, and you could lose your vision if not treated.

Your story is very similar to mine in that around August 1st of 2025, I too woke up and could not lift my head
I was in horrible pain
I pretty much stayed in bed. I was so out of it. I was aware at one point that my legs tremored greatly from the hips down. The pain in the right side of my head was unbearable. I finally went to the hospital and was put on high dose prednisone and diagnosed with PMR and giant cell arteritis. While in the hospital I was seeing double and shooting lights. Yes, prednisone and Actemra has kept my GCA under control. I am finally down to 6 mg and my PMR is back. Take any one sided head pain and scalp pain seriously. Contact your rheumatologist immediately and go to the ER. All the best to you.

That GCA is scary. Science needs to invent/create/find a synovial thinning medication. Like they created blood thinners!

Thank you everyone for your comments on how you are doing with your PMR.
Well I am down to one /half prednisolone. I tried to go to one but the muscle on my arm is really sore at the moment , as my PMR started in my right shoulder . Just under the past week or so I have found I can not walk no strength in my legs when I wake up in the night for the bathroom. I literally furniture, or wall walk to the bathroom. This stiffness does go after may be 2 to 4 hours later. I just have to keep moving .
I managed to get a same day appointment, no doctor, but a clinician. (who are great but....) she could not give a me an answer should I go up to 2 mg again. Or what was going on with my back . Was it PMR affecting my joints etc. I genuinely thanked her , then went home depressed . The system does not care until we are in crisis sad to say . I pray I do not get GCA.
I have also developed coccyx and back pain which radiates down my right leg most of the time . (could be sciatica) Both hips are sore . I did fall in the gym straight down on my right knee. this knocked my hips out of alinement . Then I fell on a tiled floor on the right side , yep the hip that's out of alignment.
I try to keep active and do basic exercises so as not to overdo things. Fed up with the medication, weight has come on, but I am after two and a half years able to stay pretty steady fluctuating by 2 lbs up and down. Yes I do need to lose a few stone . which is not helping the body at all . Oh yes I take thyroxine as well. But I will not give up .
As for stress , do we reckon this has contributed to our demise and ill health?
Once more thank you for all your comments and stay as well as you can everyone.