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 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 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.

I started an anti-inflammatory diet as soon as I was diagnosed --it's not all that different from my usual diet, which is close to the Mediterranean diet that's popular now, except to cut out red meat as much as possible and other foods on the high inflammatory list, and a lot more fruit and vegetables. They even suggest this on the Kevzara website. Whether or not it helps, it can't hurt to try to keep down inflammation and at the very least in that way support the drug regime.

It's been about two months since I was diagnosed and finally it has hit on the emotional level, no matter what I tell myself. I realize the feelings are playing into general anxiety about aging and whatever lies ahead.

Yes, I think to eat foods that are less inflammatory like fruits and vegetables, low sugar and less red meat is helpful.

PMR is a very interesting disease process. Too bad I had to find out about it by having it.

It has been an experience that I hope I don’t have again once this episode is over with!

Well, I guess "interesting" is one word for it!!! I was doing fine and suddenly have awakened with pain on the side I was sleeping on -- I guess this is the PMR. It feels like a shock -- I guess I should have expected this. So this is it for the rest of my life?