My muscles are atrophy

I keep reading that PMR doesn't cause muscle weakness so I assume it is due to lack of muscle use due to pain. I am experiencing the same thing. Unfortunately, I have used steroids frenquently through-out my life and I have never had them effect my muscles. As to the diagnosis of PMR after a vaccination (be it covid or shingles) I think we are at the stage of life that anything that stirs up our immune system can illicit a PMR response. That would include disease so not getting vaccinations is not any safer. Just my opinion.

Another matter- I have recently been given the diagnosis of Myelodysplastic Syndrome. It is something that can turn into Leukemia but doesn't always. My monocytes are presently a large portion of the blood cells and they shouldn't be. Presently, I don't have any symptomes so they are just going to keep an eye on it. It seems to be more prevalent in patients that have more than one autoimmune disease, which I do. Just mentioning it so other in my boat can watch for it. It would take an oncologist to diagnose it.

My muscles started stiffening up before I got on prednisone and it has done nothing to alleviate it. My legs feel
like they are twice the size they used to be but they are about 3/4s the size they used to be and my arms half. I feel shrink-wrapped from the shoulders down. The pain has subsided though certain parts of me are still touchy. No joint problems except when i yawn which may be muscle as well. And that makes me question the PMR diagnosis which seems to be a convenient catchall. I'm 6 months into this nightmare and my limbs feel like they're filled with cement and much as I move around the stiffness comes right back after a few minutes rest.

Wow! I don't have those symptoms. I have pain behind my knees, the back of my thighs, my shoulder, my deltoid muscles, arms, hands, and across my pelvic area; they refer to hip pain. I keep thinking I have a bladder infection. My jaw and neck pain comes and goes. When it hits, it isn't good. It doesn't last but 3 minutes. However, I do have heavy legs and sometimes I can not pick up my legs because they are so weak and heavy. I wish I had a better answer for you. Do you have any problems with your back or nervous system?

I be inclined to think it's a side effect of the prednisone, one that isn't mentioned often but does affect some of us. I read a very "deep" medical paper once that mentioned that some long term prednisone users can suffer from muscle wasting because the pred breaks down some of the muscle fibers in our legs and arms. Careful, light exercise can help to rebuild or replace the muscle being lost. I have lost most of my muscle tone over my 6 years in spite of trying to keep in shape so I tend to blame the prednisone. But I'm certainly not wishing I wasn't on it!! Prednisone is the only thing that gives us a chance at a normal life while we go through this PMR journey.

I've been on prednisolone since February; not even two months. I started tapering three weeks ago. I was at 20mg, then 17.5 now 12.5. I hurt all over. My markers are perfect. The dr wants me to continue tapering, but idk if I can. The pain and weakness in my legs are concerning. I do qigong and strong leg exercises at least four a week. I guess ill face this pain head-on and get off the steroids. Thx for your reply. Have a wonderful day. 💞🌺

I'm going to give a few opinions of mine but they are based on information that I've gotten from some very good forums and people that are very well versed on PMR and prednisone.

First, perfect markers don't necessarily mean a thing. I've read a number of times that upward of 25-30% of people with PMR have normal test results. For myself, the labs do track with how I'm feeling. For some, the labs show normal from start to end.

I'm not surprised that you're hurting all over if you've reduced from 20 to 12.5 mg in only 3 weeks! That's an extremely fast reduction of your dose. I'm assuming your initial dosage of prednisolone eliminated most of your pain? If you are hurting all over, your body is telling you that the inflammation from PMR is not being controlled - your prednisolone (pred) dose is too low. There are so many doctors and rheumatologists that get hellbent on getting a person off pred in a hurry but are not controlling the PMR in the process. It's all about the lowest EFFECTIVE dose that manages the inflammation that causes the pain. Yes, pred can have nasty side effects but it is our one and only friend in this battle with PMR. I have been on prednisone for 6+ years now and am down to a 2mg dose - very minimal. In my own opinion it sounds like you need to increase your dose, maybe back up to 20 mg and then start very gradually reducing your dose every 3-4 weeks (never more than 10% down). If the pain comes back or increases it's your body saying the dose is too low.

You mentioned about exercise which is good to try and keep in shape but usually has to be done at a lower level. Too much contributes to the inflammation and a dose that was effective suddenly doesn't work and can push you up to a higher dose to control the pain. Life can still be very good with PMR but at a different pace and level than one would want. I had a very physical job at the start of my journey. I'm still working but had to gradually reduce the amount of physical work I was doing, as too much or too intense work would cause the PMR pain to flare up. I can still do most things but at a much reduced pace from what I'm used to. No more diving into a project!

I've read that around 25-30% of PMR sufferers can control it and be off prednisolone in 2 years. However, the average is over 5 years. I'm a bit on the high side at 6+ years and hoping to be over it by the end of this year. However, I'd be equally satisfied if I was taking 2mg for the rest of my life. At such a low dose the side effects are very minor. The challenge is getting there. Sorry to be so long winded but I really feel that your doctor has good intentions but is causing you to suffer for no good result, and in truth is making things worse.

Thx, you for your comments. I'm waiting for my dr to tell me what I should do as far as increasing or continuing to taper every two weeks
I will stay on 12.5 for the rest of the week to see how I feel. I'm very concerned about my muscle strength. If the steroids are the cause quickly. I already have issues with my back that might be a contributing factor too. It's so hard to distinguish between my back pain, PMR, and the steroids. Ugh! Thx again for listening and for your advice. 💞

So the dr whos covering for my Rheumatologist whos out on maternity leave until September responded with my test results. He wrote: your test results are normal and that was all he wrote. I feel like he's blowing me off. I don't want to go to a different rheumatologist. My pain level is too high I'm going back to 15 mg and if need be ill increase it to 20. 💞 thanks for listening

Way to fast on the taper. Enough Prednisone to eliminate pain then reduce 1 mg at a time or even half mg.Get a pill cutter.I reduced 1 mg every month.Started at 20mgs.Am at 5mgs.
Have had PMR for two years am 83,covid shots triggered it but not cause.
Light exercise not heavy.Go for a walk every day if you can.
Get ready for the long haul,stay positive meditate,there is light at the end of the tunnel.Cheers.