Precursor symptoms to PMR?

@sharon44r Yes, my shoulders were incredibly stiff and painful too. I couldn't even get my coat on and off. And turning over in bed was almost impossible. Horrible. Somewhat better on prednisone but not better enough 🙂 Seeing the rheum for the first time tomorrow.

@sharon44r I have only tried prednisone so far. On it for a little more than one month, 20 mg / day. Not super effective.

I'm trying that too, modify my diet. Eat more fruit and veg, better protein, less sugar and bread. I didn't notice (stupid busy) but I guess I was feeling quite unwell for longer than the actual PMR onset. I just thought it was stress related to my personal situation, but I think now I was actually sick. My diet wasn't very good because I was on the go all the time. I'm working on it.

As part of my history, about 35 years ago I had pain in my shoulder girdle and hip girdle for no reason and fatigue. When I went to the Rheumatologist (R) I apparently gave him a textbook definition of PMR. He Rx 10 mg P daily and within 6 hours I was a new man. No pain or fatigue. When the blood work was run I had normal SED rate and normal CRP. Now the problems begin. After a year the symptoms returned. I went on 10 mg of P and everything was fine and I reduced my P to 0. But then a year later PMR returned. This went on for 25 years. Then I went on 2.5 mg a day and was good for about 4-5 years. After 5 years I started to get pain again and 5 years later, now, I am on 5 mg of P with good results. During these 35 years I have seen 4 Rs. The first one then 20 years later the second one who thought I was doing so well that anything else he could give me would not be as helpful or have more side effects. The third R after the longest physical exam I have every had (1.6 hours, hard to believe) said "I do not think you have PMR, but I do not know what you have." The 4th R thought initally that I had something else since my original symptoms started at age 40 and most PMR is after 50.
He ran more test which were negative for what I think he thought was sarcodosis. So now I am on 5 mp of P daily, with a bone scan yearly to see if I get osteoporosis. My recent bone scan was normal or above normal probably due to the extensive amount of exercise I do.

@pdxmac yes, it's just so vague, and random. I didn't go to the doctor for the previous leg pain because I didn't think she could/would do anything about a woman late 50s showing up with a sore leg without any injury or swelling or really ANYTHING to diagnose, and really didn't want to be told that I'm getting old and just deal with it. That's why I went the osteopath and massage route. It wasn't until the full blown PMR symptoms started that I saw my doctor. She *thinks* it's PMR and did some blood tests, but I'm hoping the rheumatologist is more helpful when I see her tomorrow.

I'm so empathetic with the randomness of this condition. Unfortunately there's no simple diagnosis, and you'll likely be told that there aren't any diagnostic tests that can be conclusive. Hopefully you find a great rheumatologist right off the bat, and this forum will be a wonderful resource for you. Even a good doctor won't be able to spend enough time to spell it all out for you. Good luck, and don't be shy about reaching out. This community is wonderful

Thank you, and so far this community has provided me with a wealth of useful information. To date, my CRP was high a month ago and twice as high this month (but I've learned this can be in response to SO MANY THINGS!), ESR normal first time but family doc didn't repeat, and my RBCs/Hb/Ht are low both months but improving. Other rheumatoid tests negative. It will be interesting to see if the rheum sends me for more or different bloodwork. Our family doctors in Canada are incredibly overwhelmed, and at most can spend about 10 minutes per visit firing off questions and then referring you to appropriate specialist. They are traffic cops, basically. It's really hard on them, and really hard on the patients. She didn't even have a minute to examine me. Although to fair her poking around my shoulders and hips and me saying 'ow' probably wouldn't add much to the diagnosis.

My first Rhematologist dismissed me and told me I wasn’t the normal after 2 months, see a neurologist, and he left me in pain. The neurologist said is definitely a Rhematology problem.
The second rheumatologist said I didn’t see you on the onset so he labeled me as sero- negative arthritis.
But I know from my onset it’s PMR. I go from 6 mg to 11 when I have a flare. Trying to ween off it, but every time something stressful happens and I have a flare. Wish I could get a chance to go to 5 mg

Hi @sticksandbugs, From what I've read, PMR often occurs after there's an injury, illness or something that causes the immune system to go into overdrive. I was doing a lot of walking and walking backwards, hurt my ankle, and a few days later, I had extreme pain from the neck down throughout my body. My maternal aunt got it after she hurt her knee moving furniture, and my mother in law got it after she returned from a long trip. All three of us developed GCA. Onset following an injury was pretty quick for us.
You were in pain with your hamstring a long time. My hunch is that it probably didn't trigger your PMR, but your hamstring probably was inflamed, which is why the prednisone helped.
Take care.

Hi @tsc, thank you that's very helpful. May I ask how you knew when you developed GCA? My family doc just told me to watch out for jaw pain etc, but as I have OA in the TMJs and preexisting neck issues that predispose to headaches, and also intermittent flares of iritis, I'm kind of at a loss to know when the symptoms are extra concerning!