Is PMR a form of vasculitis?

Posted by kspowell @kspowell, Apr 22, 2022

My Rheumo says no but I keep reading mixed messages - many sites and comments say it is.
It seems important to know the definitive answer, as if vasculitis then I'm definitely going to add other considerations to my potential health considerations!

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

Let’s add balance issues into the mix. In addition to leg pain with walking, I find myself unsteady and unbalanced. Have to be really careful not to fall. Have fallen twice during those periods.

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@johannab

Let’s add balance issues into the mix. In addition to leg pain with walking, I find myself unsteady and unbalanced. Have to be really careful not to fall. Have fallen twice during those periods.

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I definitely agree about balance issues. Although I’m mostly in remission I still have heaviness in my legs, butt pain on getting up from a chair or couch and have to take care with balance. I fell on a stony beach near my home while walking the dog a few days ago with no apparent cause. So lucky to have no injuries but a big reminder to take extra care.

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@linda7

Thanks for posting this. All along I've been uncomfortable with the idea that PMR primarily affects the shoulder and hip joint area. When the disease was at its worst, my whole body was affected: cramping and inability to move after sitting, leg pain with walking, sudden stabbing pains in thighs, upper arms, upper back. These symptoms seemed very different from ones that would be caused by referred pain from bursa or tendons at a joint. I don't know what pain caused by vasculitis would feel like, but it makes more sense to me that muscles and tendons all over the body are affected.

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Hi @linda7, I, too, had pain all over my body from PMR from the neck down to the feet, arms and hands. I think of it as my "astronaut suit of pain and stiffness." I couldn't understand how when I managed to walk, my legs still felt so stiff. A doctor friend commented that I stayed so stiff and sore because I couldn't get blood flow to the afflicted areas. An infrared heating pad provided some relief while it was on. When I could manage manuvering around on a mat, I stretched on a foam roller and was able to feel a little tingling. I'm just so glad that with proper diagnosis and treatment, those days are behind me, for now, at least.

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@johannab

Let’s add balance issues into the mix. In addition to leg pain with walking, I find myself unsteady and unbalanced. Have to be really careful not to fall. Have fallen twice during those periods.

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For me the balance issues I had seemed related to the stiffness and pain which made smooth, quick motions impossible. Balance involves a lot of small corrective movements to stay upright. I stopped riding my bike, even though I could do it. I just didn't feel safe or confident that I could make a sudden correction if I hit an obstacle or needed to avoid people or dogs. I'm back to bike riding and hiking now!

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@aliceoleary

@kspowell -Your final sentence in this post really resonated with me. I have similar feelings about my rheumi. I have had PMR for about one year and first presented with an extremely elevated CRP of 165. I could understand the focus in reducing that number and the steroid treatment has been successful. My CRP has been normal since last fall and we are tapering off the steroid. So, the pain is controlled but I still have symptoms which seem to come in waves and dissipate in a day or so. The symptoms include extreme fatigue, loss of appetite and body temp regulation, tingling of skin (particularly the scalp), some pain in the pelvis area, and increased morning stiffness. I characterized this as a flare and fully expected my CRP to be elevated but it was not. So I asked the doctor if these PMR symptoms w/o CRP elevation were normal but she would not engage the question.

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I am very interested to read this, particularly your reference to tingling of skin on the scalp. I was diagnosed with PMR in January and one of the odd things that seemed to be correlated with it was the desire to lightly scratch the top of my head. It does not feel itchy, but it does feel a bit weird. The tips of my fingers also feel weird in a similar way (my Dr said this was carpal tunnel syndrome). It is gratifying to see that I am not the only person with this (mild) symptom.

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@maureenw

I am very interested to read this, particularly your reference to tingling of skin on the scalp. I was diagnosed with PMR in January and one of the odd things that seemed to be correlated with it was the desire to lightly scratch the top of my head. It does not feel itchy, but it does feel a bit weird. The tips of my fingers also feel weird in a similar way (my Dr said this was carpal tunnel syndrome). It is gratifying to see that I am not the only person with this (mild) symptom.

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Welcome @maureenw, My PMR is currently in remission but I often have the desire or urge to scratch the top of my head even though I wouldn't consider it itchy. I found this interesting article that might explain the tingling.

"A tingling feeling in the scalp (paresthesia) can occur for many reasons, including anxiety, ASMR, chemical irritation, medication, migraines, nerve compression, skin sensitivity, and underlying health conditions. If you have chronic (ongoing) scalp tingling, see your healthcare provider." --- What Causes Tingling Scalp?: https://www.verywellhealth.com/tingling-scalp-causes-treatment-5216016.

Does your doctor have you on prednisone to treat the PMR and suggested a plan to taper off?

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I too have balance issues. Opt for a small step ladder instead of standing on chairs now. Also will randomly tip over by times. Luckily I catch myself. Over the last week of tapering down by 1.25 mg of Prednisone, I've found my legs to feel very heavy. Again waking up through the night with neck and pain through my upper back. Almost migraine headaches. While the pain is manageable, the lack of sleep is difficult as I have to work in the mornings. Could be much worse, as we all know. I guess the motto should be "Slow down on all levels."

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@maureenw

I am very interested to read this, particularly your reference to tingling of skin on the scalp. I was diagnosed with PMR in January and one of the odd things that seemed to be correlated with it was the desire to lightly scratch the top of my head. It does not feel itchy, but it does feel a bit weird. The tips of my fingers also feel weird in a similar way (my Dr said this was carpal tunnel syndrome). It is gratifying to see that I am not the only person with this (mild) symptom.

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I was also diagnosed in January. Much tingling, in various places, but particularly the top of my head, even as I sit here typing. I thought I had dry scalp, but no. You're not wrong in saying you are "not the only person". So many of us with similar, yet different stories. Thanks for your input.

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@johnbishop

Welcome @maureenw, My PMR is currently in remission but I often have the desire or urge to scratch the top of my head even though I wouldn't consider it itchy. I found this interesting article that might explain the tingling.

"A tingling feeling in the scalp (paresthesia) can occur for many reasons, including anxiety, ASMR, chemical irritation, medication, migraines, nerve compression, skin sensitivity, and underlying health conditions. If you have chronic (ongoing) scalp tingling, see your healthcare provider." --- What Causes Tingling Scalp?: https://www.verywellhealth.com/tingling-scalp-causes-treatment-5216016.

Does your doctor have you on prednisone to treat the PMR and suggested a plan to taper off?

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Thanks for the link. I was diagnosed with PMR at the end of January, started taking prednisone (15 mg) and am now at 9 mg, feeling very well.

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