Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Have you experimented with any dietary changes?

I’ve been reading a lot of these posts. There are many people who are tapering that are in actemra or methotrexate. Is this the normal course of treatment for this disease? I’ve been on pred 15 mg since May 26 and am to taper to 12.5 later this week.

Hi @vjs, When it comes to PMR I don't think there is a one size fits all normal treatment. My own experience having PMR twice was being started on 20 mg prednisone for both occurrences and directed by my rheumatologist to taper slowly and listen to my body for when and how much to taper. My first time took 3-1/2 years to taper off. The last six months was going back and forth between 1 mg and 1/2 mg until I could finally stop taking prednisone and not have morning pain at a level I considered too much. For me that pain level is between 1 and 2 and it usually went away after moving around some after waking up. Six years later the PMR came back and it took me 1-1/2 years to taper off. Of course I was a lot better with my lifestyle and eating habits the second time around which I think made a difference.

Do you keep a daily log of your pain level when you get up and your dosage of prednisone for the day? That really helped when deciding when I should or shouldn't taper and how much to taper down.

Yes, PMR is individual… first time got off prednisone in 1.5 years…. But even with that “short” time it cost me….. glaucoma, hypertension, weight gain and a worsening of osteopenia. So round 2 with methotrexate. Takes a long time to see improvement but it gradually is getting there. Bottom line for me: if the pain is at or below 5/10 it is a good day for me and I’ll take it. Remember, PMR isn’t good, but frankly there are many other things far worse out there.

Hi, my name is Leslie and I have recently started on my PMR journey with bilateral upper arm, hip and leg pain. Although my blood results were normal, my rheumatologist gave me a one week high but tapering course of prednisone which immediately worked. My pain returned shortly after taking my last pill, so I was prescribed 6 mg of methylprednisolone and was pain free until a few days ago when I started to have extreme stiffness only in my legs in the mid afternoon and evenings. I have no pain or stiffness in the morning when I awaken so I’ve been experimenting with taking my prednisone in the early afternoon, but the stiffness in my legs continues to bother me about the same time no matter when I take my medication. I have an appointment with my rheumatologist at the end of June. I had open heart surgery last year and my cardiologist is not pleased with the addition of prednisone. Thank you for any advice or suggestions about my leg stiffness which is affecting my ability to walk.

Hi Leslie @ellegeee, Welcome to Connect. Both times my PMR was active I did have stiffness in the legs but it was mostly in the morning and I didn't normally have any associated pain with it. Then when the prednisone kicked in and I got to moving around the legs loosened up and felt better. I think it's good that you have an upcoming appointment with your rheumatologist.

It might be good to keep track of other symptoms you have during the day and note the times they occur so that you can discuss them at your upcoming appointment. Do you keep a daily log of your dosage and pain levels?

I had a leg flare up after the bivalent and the pt attributed to the vaccine… took1 month to feel better… but this was over a year begore being diagnosed with PMR… but convinced the vaccine was the start of the over active immune system as I also have hashimoto’s…

I had no issues with the COVID vaccines other than feeling crummy for a few days. I had both Pfizer and Moderna. It wasn't until I actually caught COVID that I then flared. And now it seems my two flares since being diagnosed are related to catching "something" - both correlated with a stomach bug and some stress.

Hi folks - I'm Ted and I'm almost 81 years old - I have suffered from severe neuropathy in my feet for years now - I am also in permanent Atrial fibrillation - been able to get by OK - However, almost overnight I became a crippled old man - my neck, my shoulders and arms, my lower back, both of my hips and down to my knees all hurt me so bad I can hardly stand up, sit down, get in and out of bed - I can't remain in one position but for a few minutes and then the pain becomes almost unbearable - getting very little sleep - seems to get worse about 11pm and remains impossible until morning. I haven't been able to see my GP yet - next Tuesday. So I haven't been diagnosed yet but have been looking on the internet for answers and found out about PMR and it sure fits my symptoms - I'm just starting my journey with this malady - we'll see how it goes - glad to have found this forum!

Does PMR always have severe stiffness in shoulder and hips so that arms can't be raised above head and hip pain makes it hard to get out of bed? Could muscle pain in the neck, shoulders, arms, hips and upper thighs be PMR, along with achy shoulder joints? Do SED rate and C Reactive Protein tests have to be elevated to diagnose PMR? I was told I have Fibromyalgia, but also heard due to my age (72), it could be PMR? Any suggestions are welcome.