Any difficulty in diagnosis of PMR?

Posted by crisco50 @crisco50, May 4, 2023

In my research I have noticed that many of the symptoms of PMR share many common symptoms of other diseases. For those of you already diagnosed, what was the length of time that it took to get a diagnosis?
I also read that markers in blood tests are almost normal in some cases & therefore not helpful in finding a diagnosis. Have any of you faced this obstacle in getting a diagnosis?
What was the symptom or condition that finally led to a diagnosis of PMR?

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

Yes, GCA can cause blindness or stroke if not treated with the proper dosage of prednisone or comparable medication. The definitive test for GCA is a biopsy of the temporal artery. Take care.

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My CRP blood test is always elevated. But when you get prednisone & quick relief , it’s PMR.

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For the majority of us it's the difficulty trying to get out of bed in the mornings. The pain is horrendous and stiffness throughout the day is awful. Yes, lots find that their CRP/ESR is normal. Mine was up to 115. Currently, mine is 3.6. I've chosen to use the Ultra Slow Taper as I was yoyoing far too much over the three and a half years since diagnosis. I chose to only taper by 0.5mg every six weeks. Sadly, three months after diagnosis for PMR GCA kicked in so upped my dose to 40mg where I've tried so many different tapers and finally hope I'm on the homeward journey. Still not holding my breath though.

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@jennywren

For the majority of us it's the difficulty trying to get out of bed in the mornings. The pain is horrendous and stiffness throughout the day is awful. Yes, lots find that their CRP/ESR is normal. Mine was up to 115. Currently, mine is 3.6. I've chosen to use the Ultra Slow Taper as I was yoyoing far too much over the three and a half years since diagnosis. I chose to only taper by 0.5mg every six weeks. Sadly, three months after diagnosis for PMR GCA kicked in so upped my dose to 40mg where I've tried so many different tapers and finally hope I'm on the homeward journey. Still not holding my breath though.

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Don't despair@jennywren. I went undiagnosed with PMR for about nine ten months. Then symptoms changed and it was diagnosed as GCA with high inflammation markers and biopsy of my temporal artery. I was put on 40 mg prednisone with a taper of 5 mg every two weeks. This was for a year and a half. I've been off prednisone since October and now just have normal aches and pains associated with osteo arthritis, TMJ, a torn rotator cuff. Everyone's journey is different, but eventually there's light at the end of the tunnel. It's tough, but try to stay as upbeat as you can and be kind to yourself.

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@gailg

I am going on 3 years. Saw my GP, a pain management doctor, a neurologist, and a neurosurgeon. All had different opinions. Started in my hip and thighs, progressed to shoulders arms, then to hands. Survived on massive doses of ibuprofen (no side effects from that yet.) It was gradually getting better when I saw a new GP who right away said probably PMR. But when my blood tests came back negative he said couldn't be. Now it has recurred in my hips, but not nearly as bad. Back on the ibuprofen. I do have hope it will finally go away. I am sure PMR is what I have and the most doctors don't understand the symptoms. If I am not better soon I will demand steroids. Thanks to this site I finally understand what I am dealing with.

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"Pain not relieved by Nsaids" is what I have always read as a primary symptom of pmr. . In that case, the ibuprofen should not be working That's how I was first diagnosed. My pain was relieved almost immediately with my first dose of 10 mg prednisone after taking Advil and Naproxen with no success. My husband is a primary care physician and he was finally able to diagnose my condition. I also had a 5 lb weight loss of from 138 to 132 which was a complete surprise. I was not trying to lose weight. I actually need the extra pounds to be my correct weight. I have flare ups a few times a year and it seems to be getting more frequent and more debilitating in the 4 years since first diagnosed. Now I seem to be more fatigued, dizzy, and lethargic along with joint pains and stiffness and it lasts longer. However, I do tend to hold back on starting prednisone until I get so frustrated that I'm feeling so bad.

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Thanks for your reply. Steroid injections, because they thought my issue was orthopedic, helped quite a bit. It took so long to diagnose that I lived off the ibuprofen just to make it through. It may have just masked some of the pain but it was barely bearable. After following this blog I know I have had all the classic symptoms, and like you I had unexplained weight loss. I have had one flareup in the last 6 months and actually now feeling pretty good. I dread the thought of flareups but if it is as unbearable as before I will know what to do and will ask about prednisone. I sympathize with anyone going through this and wonder when the medical profession will get a better handle on it, at least as far as a timely diagnosis. Good luck to you!

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For those of you diagnosed with PMR, did all of you have severe joint pain in the shoulders, arms and hips that you had trouble getting out of bed or from a chair, and raising your hands above your head? I've been diagnosed with Fibromyalgia, which has similar symptoms to PMR. Mornings I have terrible neck, shoulder and arm pain and sometimes leg pains, but I don't have any of the difficulties mentioned above, although my shoulder joints are often painful. I'm trying to figure out if it might be PMR instead. Last year I had blood tests looking for inflammation markers, SED and C Reactive Protein and all were normal. I welcome any comments.

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@ripley

For those of you diagnosed with PMR, did all of you have severe joint pain in the shoulders, arms and hips that you had trouble getting out of bed or from a chair, and raising your hands above your head? I've been diagnosed with Fibromyalgia, which has similar symptoms to PMR. Mornings I have terrible neck, shoulder and arm pain and sometimes leg pains, but I don't have any of the difficulties mentioned above, although my shoulder joints are often painful. I'm trying to figure out if it might be PMR instead. Last year I had blood tests looking for inflammation markers, SED and C Reactive Protein and all were normal. I welcome any comments.

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When I was diagnosed in Feb2021 I had bilateral hip and shoulder pain and stiffness. I also had neck stiffness and wrist and thumb joint pain.

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@suemce

When I was diagnosed in Feb2021 I had bilateral hip and shoulder pain and stiffness. I also had neck stiffness and wrist and thumb joint pain.

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Did those symptoms limit your daily movements, like getting out of bed, dressed, etc?

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@ripley

Did those symptoms limit your daily movements, like getting out of bed, dressed, etc?

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Yes they sure did! That is what I was experiencing again when I got down to 1 mg. Driving was also an issue with the stiff neck. That hasn’t happened again fortunately.

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