I was diagnosed PMR with raised ESR to 40 two years ago. Everything stabilised with lots of drugs. I was always at about 28-34 ESR. Now all of a sudden ESR raised again to 55 is this serious? I don't know what all this means and my Doctor is being very cagey. HELP! I am 44 years old now. I cannot allow myself to put on weight as I have lax joints and arthritis this also worries me. Constant dislocations will get worse if I put on weight. Dislocated left ankle last year just getting up out of the chair.

10 Replies

  • Hi there

    I am assuming your concerns about weight gain are in relation to needing to take steroids?. Has your doctor suggested this is a flare up/return of PMR?

    Raised ESR is simply an indicator of the presence of inflammation - it does not indicate where or why and alone is notoriously unreliable. You really need to speak with your doctor about the significance of your results/for you, especially if you have multiple co-existing health conditions. I hope you get the answers you seek

  • Hello happyface

    You haven't mentioned whether you are suffering from a return of the usual pain and stiffness of PMR. ESR can rise in response to many other illnesses and infections, apart from PMR. Have you had a CRP blood test done as well - this can prove a more specific marker of inflammation. I think you need to bring your Dr out of his 'cage' to reassure you, especially in view of your other health problems.

  • My symptoms haven't stopped just get worse. A lot of pain in all my joints etc. All other blood tests seem ok. I will check if I have had the CRP not sure had so many tests. Thank you for offering some help.

  • Hi Happyface

    As you are only 44 you are definitely not a typical PMR patient and you should be under the care of a consultant rheumatologist. There is any number of reasons why you may have a raised ESR or CRP count. You may even not have PMR at all but one of the 'mimicking' illnesses that looks very much like it. It is worth bearing in mind that in a recent study, 50% of people who were thought by their GPs to have PMR turned out not to have it. I would suggest that you go back to your GP and insist on being referred to a specialist.

  • I was sent to a rheumatologist two years ago when my ESR was 40, no mention of being sent to him again even though my ESR is 55. I have been feeling very unwell and have been told to double butrans patch and ibuprofen. On advice from Celtic I have asked for a CRP blood test which I will have done. I have another appointment on Thursday next week to see if putting me on steroids at 20mg is having any effect. Never been on steroids before. I am so desperately in pain that I need to get on top of this somehow.

  • If in doubt the "acid test" for a diagnosis of PMR is to try steroids... along with symptoms and blood test results, a good response within a certain time frame is USUALLY considered indicative of a diagnosis of PMR...

    When I saw the rheumy he did not think PMR was likely because he felt I was too young and because I already have one of the inflammatory arthropathies... My ESR has not dropped below 78 in the past few years (Unrelated to the PMR)but the pain and stiffness of the PMR is VERY different from the joint pain and stiffness of the arthritis and I did get a response from steroids and eventually PMR was confirmed.

    From what you are saying I would think a referral to a rheumatologist would be really useful and I would be seriously pushing for this.

  • What happened the first time you went to see the Rheumatologist? What did he/she say? Did you have a diagnosis of PMR? Or did the rheumy think it was something different? The fact that they have kept you off steroids all this time suggests that you may have a differential diagnosis. None of us, however well-meaning or knowledgeable we are, can give you a diagnosis or make any assumptions. We are not medics, we haven't met you, and we are only in a position to give you information. The comment about 'take the steroids to see' is correct in that a lot of doctors put patients on steroids to 'test' the diagnosis of PMR. However, as many rheumatologists have told me, including four who have a particular specialism in PMR, almost anything will respond to 20mg prednisolone so in itself it should not be used as a diagnosis by a GP.

  • I was diagnosed as having fybromyalgia until now when I am still not responding to treatment. Because of all the other skeletal problems I have I think it is like trying to find a needle in a haystack to get the right diagnosis. I will try the steroids although I am feeling rather ropey at the moment. I know that doctor's have so many labels for conditions, all we want is to feel better whatever the label. I need to get on top of this again by September, second year of my degree, it was hard the first year, second will be worse. I am so glad I found this forum I thought I was all alone with the thing. I feel like my body is doing everything it can to ruin my life!!!!!

  • I have been on steroids since Monday. The pains have left my arms for the first time in two years yippee!!!. My legs don't feel like I am carrying a ton of bricks attached to them. Hasn't touched my arthritic pain or my extreme fatigue. Now my body clock is all over the place. I didn't get to sleep til 5am this morning, went to bed for an hour from 4pm to 5pm this afternoon. Ending up doing the dog walk at 8pm. I have no appetite, living on fresh fruit, which I try and eat throughout the day to keep my body going. Much easier to pop a strawberry than a full meal. I have always been a bit weird over food, since anorexia in my teens. I am definately all over the place. Is this me being weird!

  • If you have inflammatory arthritis (RA or PsA for example) the pred normally would have some effect on the inflammation there too as it does not discriminate.

    Not my place to give lifestyle advice but I have to say on reading your posts it does not sound like you take the best care of yourself and maybe addressing some of the issues you have identified might actually help alleviate some of your symptoms.

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