Any difficulty in diagnosis of PMR?
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?
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After 4 doctor visits and $15,000 in testing at the ER I diagnosed myself on Google. Then went in and told them what I had and yes, they confirmed PMR. I am not settling for years of Prednisone. I started this program. Google paddisonprogram - I'm now on Day 14. I can't post the link on this.
It is worth a read. It is for RA but any people with PMR have had success. You will be amazed why you may have PMR.
I was diagnosed w PMR last Nov w normal inflammation markers. There’s a small percentage of people w PMR who don’t have elevated inflammatory markers. I took methotrexate (along w prednisone) for 6 mos but side effects not easily bearable. I’m still taking prednisone but less of it. Good luck.
What were your symptoms that led to your diagnosis? Thanks.
Pain in neck,shldrs, hips, low back, & one painful knee. As you’ve probably read on here, symptoms can vary a lot. I suggested PMR to my PCP & got shot down. She did at least refer me to a rheumatologist who diagnosed me. Prednisone is the only thing that relieved my symptoms. What a relief to discover this. It just treats symptoms though where methotrexate is what my rheumatologist calls a ‘disease modifier’ but isn’t tolerated by everyone.
@gailg I just posted elsewhere the site PMRandIL6.com -please look at the slides where you will see that NSAIDS do not treat PMR! this is an immune cell mediated disease ! And @tsc is correct - there is literature specially about patients with normal levels of CRP and sed rate.
Initially after my first bout of Covid, 4 months later I woke up with terrible hip pain and debilitating weakness, and after I got Covid a year later for the second time (6 months after 2 Pfizer covid vaccines!) I couldn't raise my arms and my shoulder/collar bone pain was severe. After a year of testing (my CRP and SED rates were initally totally normal), I was finally diagnosed with PMR. My CRP and SED were high at the beginning of this year, and I am still on prednisone and waiting to start Kevzara next week, but when I weaned down to 1 mg prednisone and then 0 last month to see where I was with the condition, my CRP/SED was again normal. Go figure! My debilitation and pain came right back so I'm on 10mg prednisone again after weaning down from 20. It's all so mysterious.
Hi @ripley, I had PMR undiagnosed for a year because I thought it was fibromyalgia. I had incredible pain and stiffness throughout my body from the neck down, everywhere, which eased up a little in the evenings. I had blood tests about four months after symptoms started, but the inflammation markers were not elevated significantly so I wasn't diagnosed. Symptoms stayed as they were, then changed. I was anemic, got shingles, lost about 15 pounds, had an incredibly stiff neck and short stabbing pains in my head. Blood tests about a year after the first symptoms started showed inflammation markers were very high, ESR and CRP. I had Giant Cell Arteritis and was put on 40 mg prednisone to start, tapering down every two weeks. Have been off prednisone for about eight months now.
Maybe it's time to get blood tests again.
Were you ever prescribed prednisone on a trial basis to see if it relieves your symptoms? PMR can be difficult to diagnose and the relief of symptoms with prednisone can help with the diagnosis.
Take care.
The year that your PMR was undiagnosed, did your muscle stiffness prevent you from raising your arms in the mornings or cause difficulty getting out of bed? I have muscle pain but not stiffness that causes limits to movements. Did any Dr diagnose you with Fibro? I will have to re-visit my Dr I guess.
I had muscle pains in both arms when I raised my arms. Now I know that bilateral pain is one of the markers. No doctor suspected PMR until my current primary dr in a new city. He did a blood test but it was normal. Still, he said I could see a rheumatologist if I wanted to, so I did, and by then, a month later, the markers were high.
I started Kevzara a month ago. still on prednisone with it but the hope is that the Kev will help to wean me off the prednisone. This is a new diagnosis, the first serious condition I've had in my entire life (I am 85) so I realize that's lucky, but it's still a shock and depressing.