since the holidays I’ve been so stiff and sore all over I can barely move—in my shoulders, arms and thighs, not core. I mean the least little thing that I was able to do became almost impossible. For what it’s worth, I sprained my ankle in august, 3 doctors later, it’s not healing, so I’ve gone from walking 5000 steps a day to 3000 or less. Household steps mostly now. Anyway dr. Google said I might have 100 things wrong with me, I opted for 99 of them. Went to my wonderful gp for confirmation. He said he didn’t see any warning signs that prompted any referral elsewhere; his plan: up the prednisone higher, 3 mg wasn’t enough, he said, I need more. Second, do bloodwork as a rule out. Third, am I able to exercise, he asked? (No. I’ve lost so much weight on pred, my muscles are gone, I’m skin and bones with my ribs sticking out.). So docs plan: laid out 1-2-3. I upped the prednisone from 5 1/2 to 10, this is my 6th day. Im a teensy bit better, not a lot, but more energy. Bloodwork perfect except for elevated wbc due to pred, it’s always elevated. That leaves: exercise to build muscles? But I can barely move. Ideas? Thoughts? Thank you so much.
flare or steroid myopathy?: since the holidays I’ve... - PMRGCAuk
flare or steroid myopathy?
"I’ve lost so much weight on pred,"
Really on pred - or since about 10mg pred?
since on pred.
I also lost weight on prednisone - about 20 lbs, which had me down to the weight I was as a 15 year old, and I was a scrawny teenager. I have gained half of it back and I’m now the weight I was in grade 12. I am currently tapering down to 5 mg (started out at 40 mg at the end of May 2021).
Well, for what it's worth, my knee didn't get better until I stopped overworking it (mistakenly being told it was OA only, although I knew it was an injury) and when I did get smarter I supported it with a brace, giving it a chance to heal. Non-weightbearing isometric exercises to improve strength of supporting muscles was another key, and this is where physio exercises really helped.Additionally, I had a serious PMR flare (supported by test results) but not until about six months after the original injury so don't think there was a direct connection. Certainly restricted ability to get in those steps didn't help at all!
Hello, doesn’t sound ideal does it? I did chuckle at the Dr Google suggested a 100 causes and you opted for 99. I imaging I would too. Forgetting the Pred dose for a minute, I am wondering what the doctor thinks of your weight loss, have you made clear the extent of it? I had dramatic muscle loss on higher doses of Pred and never put on weight (low carb diet) but I can’t say my ribs were showing and that I was skin and bones. Are you getting enough calories or increasing your intake and if you are, is this weight loss in spite of that? Even if it is ‘just’ myopathy it sounds quite severe and perhaps needs more than a pat on the head. I just feel it needs more scrutiny because of the fairly big reduction in your Did the doctor check your muscle enzymes and was myosotis ruled out?
Regards the ankle, in what way is it not healing? I know sprains can go on for months and months but was it x-rayed? It can also depend rehab you did and whether the damaged area is getting ongoing abuse due to the way a person is walking about with other musculoskeletal issues.
thanks. Myosotis was ruled out, doc didn’t think I had it anyway as I’m stiff and sore in shoulders, arms and upper thighs mainly, no swelling, no pain. Ankle: X-rays twice. Couldn’t tolerate simplest physio exercises, saw urgent care the day it happened, then ortho clinic doc 2 months later, and then foot and ankle specialist recently. Interestingly the foot and ankle doc said he was familiar with pmr, pred, and slow healing of sprains.
As for weight, at the onset of pmr I weighed around 112, now I’m a hefty 102 and holding. I’ve been there for quite a while now (2 years?); it’s just lately that my muscles seem to be hanging. I look nothing like my non-pmr girlfriends of the same age.
Are you able to go swimming as that supports you and can be a good firm of exercise? You could look up some chair exercises in the internet.
no to swimming, allergic to chemicals in pool. Chair exercises though, good idea!
Perhaps hydrotherapy might help.
duh. I have a whirlpool bathtub, haven’t used it in years. Cranked it up per your suggestion, amazing—my body didn’t like it at all, too frenetic on the wobbly muscles, But I think it’s such a good idea, will keep at it. Thanks for the suggestion.
Sorry about all the pain you're experiencing. Upping the prednisone does seem to help you a touch. I had a relapse & severe pain, also upped my pred to 10mg. A friend suggested taking Tylenol with Arthritis (extra strength Tylenol didn't help at all) & this really relieved the pain. Strange that there are no other ingredients listed, only diff. is Extra strength Tylenol is 500 mgs & Tylenol for Arthritis 650 mgs. But it did the trick for me! I only took it for a few days.
Since then, over the last 2 mos. I have tapered back down to 2mgs. & have only needed to take the Tylenol for Arthritis a couple of times so far.
I hope this may help.
I too have steroid-induced muscle myopathy. It began very dramatically when I was on 40-50mg of steroids. I became skin and bone within a couple of weeks...the muscles just dissolved. Doctor labeled it and said it would improve on lower doses...now 3 years later on 3.5mg and it has hardly improved. Legs look a little better but upper arms very weak. Lifting a kettle is difficult... My GP recently retired and I changed to a new one...who is also brilliantly well-informed about PMR etc. I brought up the muscle myopathy again...and asked if it would ever improve...he said he couldn't be sure...usually it does at low doses...any exercises I should do? he said only what I can comfortably manage. I really find the regular minimal exercise I do makes no difference...
someone on this forum recommended qi gong and I can now manage this...usually in 2 sessions...
youtube.com/watch?v=cwlvTcW...
I do lift things ( a kettle, saucepans etc) to try and improve upper arms but it exacerbates the bursitis in my right shoulder (another gift of PMR/pred)
I think the gentle exercises I do might stop further degeneration even if I don't seem to improve.
Please be in touch (private message maybe) if you find any exercises that help.
Keep trying and don't give up hope. it will help. I know what you are experiencing and echo your concern. one cannot rebuild muscle without some serious effort and knowing how much to push is the quandry we all face. Too much and we overdo it and risk flare too little and no build. There are many other associated factors influencing the rebuild of muscle tissue. I am currently looking into this with a top team of experts and we are trying to devise a way to recover but it will take some time to structure it properly. We all need hope and I'm going to use myself as a guinea pig in this program. Let's see if we can find a way through this together.
do keep me updated! I am happy to be someone's guinea pig.
rely on it 
aging hippie here. Before you were born I saw them do qigong every sunrise in China, lovely way to start the day. Thanks for the suggestion, I might try it. I also started following “easy fitness over fifty” on Facebook—she does a lot of very simple chair and standing movements, I do about two at a time, then sore again, but I’ll keep at it, gotta do something. And I saved a long ago post on here (somewhere) from a woman who said she had muscle myopathy that didn’t get better until she got to 3 mg. I’m a long long way from 3 mg. I’m hoping that the simple movements will get the muscles going and ease the soreness.
thanks for the reply,..you are so encouraging. the muscle myopathy seems a somewhat rare side effect...and my doc (who is very well informed on PMR) really gave me no more than a shrug of the shoulders...nothing to recommend...and it might recover or not! But we will battle on!
Not al all rare. They are just poorly informed. Some have a more severe reaction and greater waste. We all suffer from it to some degree or other. The key issue is to recognise this and find a way to monitor and measure our reaction so that we can address it and halt its worst effects. That's what I am trying to achieve with this project our team is considering.
Understand completely Twopies. Don't despair, nothing worse. My ankle issue is an achilles tendon pull so it limits rotation and hampers balance and exercise, even simply walking and getting up and down stairs. Poor monitoring of various prescribed heart drugs has led to a low BP and no energy. That's been addressed now. See above my reply to ageingfeminist. I'm hoping that this will produce results so watch this space.
I shall not despair. More than 20 times a day. Looking forward to your Guinea pig results, I know there’s an answer for us out there somewhere. And I’ll be watching your space.
Don't despair at all Twopies. It doesn't help but I understand. When the deterioration seems inexorable it's hard not to.
Further to this, our team is talking and planning a program but it needs to be one that caters for all abilities and levels of degradation in physical ability to be of use to all. Hang in there and we'll see what is possible. It can't be rushed as there is much to take into account.
Advice on steroid sparing agents and process of adding in or switching?
The saga continues...hit a brick wall
Flare or hiccup or stress?
Flare or Adrenal Crisis
