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

Hi,
I have been dealing with PMR for a while. Started on Prednisone 15 mg last July after figuring out the diagnosis of PMR. I am tapering off the prednisone as the side effects are causing me more issues than the PMR at this point. (Sleeplessness, crabbiness, wt gain if I don’t watch my weight, high blood sugar if I don’t watch my diet, those types of things) The prednisone has helped but time to get off if it. I started at 15mg and am down to 7 mg now tapering down 1mg per month. Tapering more than that can cause other issues so you must taper SLOWLY and under a Drs care.

I am finding high sugar in my diet seems to exacerbate the PMR symptoms, walking and arm exercises helps me with the stiffness. It’s a fine line though, if I exercise or do too much, then I pay the next day.

I find PMR to be frustrating at times, but I am progressing forward with the taper, watching my sugar intake, figuring out HOW MUCH activity I can tolerate and WHAT activity I can tolerate. Right now I do about 30 minutes a day, of walking and arm exercises depending upon the day. If I have too much stiffness to walk very far one day, then I make up the time by doing arm exercises while sitting, which helps the shoulder stiffness. I still do my housework, grocery shopping, etc even if painful to stay as active as possible.

Because PMR is an inflammatory process, I found out the hard way that I need to be careful with repetitive activity as I developed a bursitis of my hip from too much gardening. Again I had to figure out HOW MUCH and WHAT type of activity I can do. Keeping my sugar intake down along with eating fruits and vegetables helps too.

This is a long term challenge but I hope what I have figured out and pass along to you will help.

Please discuss any diet, medication and exercise changes with your Dr. We are all different and what works well for one person may not work for another. Keeping track of pain is a plus too.

I agree 100% with you. I have started methylprednisolone in March for initial PMR and have had recurring infections ever since! UTI was the first I ever had, then intestinal infection, now ear infection, etc. I’m down to 2 mg of my, feeling pretty good, but it’s not over yet. My CRP level is now normal (from 79 to 11) so I’m hoping I’m through the worst of it.

Hi @loujc, After a year of symptoms of PMR and GCA, my GCA was diagnosed by a friend, an infectious disease specialist. He is familiar with PMR and GCA because those with symptoms are often referred to him by physicians who believe their patients have infectious diseases. He said he suspected I had GCA, and told me what tests to ask my PCP to order. MY PCP scoffed when I told him and said if I had GCA I'd be blind. He called to apologize a few days later when my inflammation markers were off the charts.
A good diagnostician will review all the symptoms, lab test results and try to put them together vs. chasing every symptom and test result down a separate path.

I have been taking 15 mg prednisone for a week and I am very dizzy most of the day. I wonder if it is from the prednisone or the PMR. I'm not sure it is working either tho I don't hurt as bad but still hurting.

Hi Bren….I also have periods of dizziness as well as tingling/numbness in my legs, but I don’t have very much actual pain at this point even upon awakening.

@bren2023, I have exactly the same issue. I am still taking 20 mg of prednisone but my PMR pain is still present. I also have dizziness which I attribute to prednisone. I am really going to commit to cleaning up my diet because I am ready for my breakthrough and sounds like you and others are too. ❤️

I think I will stop the prednisone until I see the rheumatologist in 5 weeks. I noticed that my thyroid gland is sore and I looked it up and found it can be caused by prednisone as well as other meds. The doctor says it is safe to stop since I have only taken it for 8 days.

Found this: https://www.drugs.com/medical-answers/prednisone-rapid-heart-rate-3565627/#:~:text=by%20Drugs.com,over%20100%20beats%20per%20minute.

Looks like a side effect of prednisone can be increased heart rate…

I am new to PMR. I am on 9 mg of prednisone and Kevzara, which my dr hopes will help to get me off prednisone. I am pain free with this regime so far but of course am worried about side effects of the drugs, and also adjusting emotionally to having this change in my life -- I'm 85 and it is the first condition I've ever been diagnosed with, so I realize I'm very lucky.

I am having periods of dizziness, too, though I've had episodes of this before, but this seems different, more constant. I assume it is Kevzara since I didn't have this on prednisone alone.