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Polymyalgia Rheumatica (PMR) | Last Active: 4 days ago | Replies (30)

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@summertime24

yes i also have POLYMYALGIA RHEUMATICA, I JUST RECEIVED THIS NEWS, SO I AM NEW TO ALL OF THIS, on Prednisone, and have good days and bad days, i have trouble walking, just overall feeling of yuck all day, some nights i can not sleep, is this normal ? i have read up on what to eat, and not to eat, doing good on that. Does anyone ever get well ? DOES ANYONE EVER go into a remission? what kind of things can i expect ?

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Replies to "yes i also have POLYMYALGIA RHEUMATICA, I JUST RECEIVED THIS NEWS, SO I AM NEW TO..."

Welcome @summertime24, Sorry to hear that Mr. Ugly has invaded your personal space. Eating healthy with less inflammatory foods definitely helps but it can be a struggle even doing everything you can with a healthy lifestyle. I've had PMR twice. First time it lasted 3 and half years. The second time 1 and half years. I had a six year remission after my first bout with PMR. I'm working on 7 years now. We are all different but both times I was started on 20 mg prednisone and it pretty much got rid of my pain a few hours after starting it. Then the pain would be controlled until my next dose the following morning. Others have used alternatives in addition to the prednisone to help taper off and control the pain.

I did a search of Connect for "PMR what helps" if you want to scan through the many different discussions, or type in some new search words to tune it to what you are looking for - https://connect.mayoclinic.org/search/discussions/?search=PMR%20what%20helps

The good news is that your recovery has begun since you are on prednisone and reading this blog. It's going to take some patience and time. Plenty of examples of people who recover. Do your best to keep on living your best life.

Sorry, you have joined the PMR club. This is a good group to ask questions and see what has worked (or not) for others. What dose prednisone are you on? When I was diagnosed with PMR and possible GCA in late July 2024, I was started on 60 mg. of pred. I had poor sleep patterns for a couple of months, due the the Prednisone. I was constantly fatigued, due to sleep deprivation. I had to take a 2-3 hour nap every afternoon. Once I started tapering, my sleep pattern improved.

Yes, I know what you're saying about the "overall feeling of yuck". I call it 'generally crappy'. I think the medical term may be 'malaise'. I'm being treated by a rheumatologist, but my primary PA got me diagnosed quickly, by contacting the rheumatolgist the day I saw her. She recommended an 'anti-inflammatory diet'. That's all good, but the Prednisone turned me into a diabetic. If I look at certain foods on the anti-inflammatory diet, my blood sugar spikes. I try to follow it loosely.

Do you have trouble walking due to joint pain? You should try to do some type of weight bearing exercise (walking), as the Prednisone can negatively impact your bone density. You may want to get a bone density, if you haven't had one recently. Discuss with your doctor, what supplements you should be taking.

Two and a half weeks ago, I started Actemra infusions. I couldn't get below 8 mg. I had a major flare-up in mid December and all my initial symptoms returned, including the GCA symptoms. I was following my rheumatologist's taper schedule. Now, I know, that I need to taper at my own pace. There's no majic formula. Everyone is different. Slow and steady is the key.
I've seen where others in this group have had good success in lowering their Prednisone doseage without flare ups. There are some, who have been able to eliminate Prednisone. From what I understand, PMR can go into remission. And then, it can rear it's ugly head again.

This is a good support group to ask questions and see what other's are successful doing. Good luck.