PMR and Hip, Back Pain

Does seem directly related to the pain. I have been having balance issues since early in my diagnosis and treatment that are worsened by pain but not directly tied into them. Just when my feet are bearing weight only. Not inner ear related. Seen two neurologist and my primary (had MRI) and rheumy, of course. They don't know what to make of it. Very annoying. I can still ride a horse, 'though. That's a plus. Thanks for sharing.

John, I just got back from my rheumatologist. His magement must really like him because he spends so little time with his patients. And Heaven forbid if he should smile. Wants me to go down one pill. Currently at 8 mg prednisalone (= 10 mg prednisone). I told him that was too fast. My adrenal gland wouldn't keep up and I would feel terrible. He expressed doubt that my adrenal gland would come into play that soon. I told him about accidentally only taking one pill a couple of months ago and how bad I felt until I realized what had happened. He thought maybe it was my disease not letting me drop down. So we comprimised on one pill (4 mg) and 2 pills the next day. If that doesn't work, then call him. I'm skeptical, but I'll try it and we'll see....

Good for you! Do they make prednisolone in small tablets? My rheumy got me an Rx for 5, 2.5 and 1mg tablets. When things got tough tapering I was taking 1/2 mg doses and cutting the tablets in half.

I would keep a daily log and record your pain level when you get up along with the days dosage if you are not already doing that. Gives you ammo when you talk with the doc and lets you ask some more questions. 🙃

Your post is really helpful to me thanks. I’ve gone from 15mg to 20mg back to 15 mg and I’ve been noticing pain in different areas from where I first had the pain. I still have pain behind my knees if I try to kneel down. Now I also have pain on the insides of my knees which is new and a bit bizarre. I wasn’t sure if it was a flare but you’ve made me realise the inflammation can move around. I guess that’s what it is then. I don’t really want to go back to 20mg- but will see my Rheumatologist in a couple of weeks and discuss. Thanks

Physical therapy has helped me with balance issues. Walking every day also helps.

Thank you, I agree that PT is helpful. And was using a treadmill faithfuly but now having trouble walking. Definently, not the right direction. Started using a cane, however and that helped take pressure off my trochantor bursitis.

Here's a question for anybody. Do you think it is possible to have PMR relapse with only one area of the body affected? Such as you were diagnosed with typical hip and shoulder girdle pain and positive CRP and Sed rate and now your tests are normal, your arms are fine, but you have hip girdle pain and stiffness? Give your opinion. I know what my rheumy thinks.

Well, yes...🙃, My PMR is in remission but I have sore arms and hips which give me grief at night because I'm a side sleeper and it's tough to get through the night on one side or the other. Mine's partly old age and I'm sure my degenerative arthritis plays a part. I have been wondering if my PMR is coming back but as long as it stays at this level I don't want to go on my happy pills again.

I too have severe PMR pain on the inside of my knees and goes down to my ankles. Prednisone helps calm the pain but too much of it can weaken your tendons. Also, prednisone can weaken your Achilles tendons, making it harder to walk. There is a fine balance in the treatment between the # of mg/day & PMR. My knees became weak and unstable while on 20 - 15 mg/day. I quit prednisone for a week, exercised a lot and my strength/balance came back-so did the PMR. I restarted with only 5 mg and I am improving. I may have to do 10 mg once or twice a week to find a balance.

Great question, Suetex and very interesting comments from John and Dallas too. I personally think it's definitely possible to have a relapse and associated pain/stiffness in only one area. I've read a number of times on forums where people didn't catch a flare early because the pain wasn't "typical" and wasn't like their original pain when they were first diagnosed. I've had the side effect of muscle wasting and went from very physically fit to having biceps and leg muscles that are totally out of shape. For me, unlike Dallas, lots of exercise triggered the start of flares. It's such a fine line knowing what's new inflammation that's the start of a flare, or am I too low on my dose or is it arthritis and other players joining the party? I may be totally off base but if I start having muscle pain anywhere that I can't attribute to work, exercise, stretching, etc, then I'm going to figure the PMR is telling me to pay attention because there's inflammation going on.