Has anyone experienced steroid myopathy?

Doctors don't tell their patients very often that they have steroid induced myopathy. When you clarify that steroid induced myopathy is a feeling of weakness and also muscle wasting then I see people complain about those symptoms all the time.

I think PMR pain sometimes overshadows what happens to our muscles when we take prednisone for a long time. I definitely had muscle weakness and muscle wasting but I was never told I had myopathy.

I'm very sorry for your pain and disability and hope you and your doctor can find a way for you to feel better soon. Here's a link to an article that may interest you https://www.ncbi.nlm.nih.gov/books/NBK557731/

Yes, thank you for the article.
I definitely have this. It’s the weakness that’s so awful. I’ve started on an elliptical to try to get some strength back in the ligaments, tendons and muscles.
I only have a GP. On a wait list for a rheumatologist which is about 1 year. My GP just says to get down to 5 mg as quickly as I can.
I’m at high risk of a fall of course.

"I’m at high risk of a fall of course."

I use a rollator which is a walker with 4 wheels and comes with a seat. There are many styles and price points to choose from. I would think insurance would pay for this type of medical equipment if a doctor wrote a prescription for it.
https://justwalkers.com/collections/rolling-walkers
I remember a doctor telling me how painful it looked when I walked. I denied that it was painful but said it hurt when I walked too much. She said I needed a walker. I protested and said, "I never fall." She escorted me to the physical therapy department and told the therapist I needed a rollator. I wasn't sure what a rollator was but I assumed it was something to prevent falls. I reminded my doctor that I will never fall. She said the rollator wasn't to prevent falls but she wanted me to have one to "keep me mobile."

As much as I hated the rollator at first ... it has become my best friend. I can walk as far as I want and sit down whenever I need to. You aren't supposed to use it like a wheelchair but I can scoot around a bit while sitting if I need to.

The greatest thing is my rollator never complains about carrying my bags for me when I travel!

This is a great article. The whole thing is a good read but the first paragraph says it all.

"Corticosteroid-induced myopathy is an iatrogenic myopathy caused by chronic high to moderate systemic corticosteroid use. This is a common condition that must be differentiated from other iatrogenic and organic causes of myopathy. Diagnosis is based on a high degree of clinical suspicion in patients on chronic steroids; prompt initiation of treatment in the form of corticosteroid withdrawal, if possible, should be initiated to avoid the morbidity associated with the condition."

I’m so glad to see someone encouraging @myrlyn3b to consider a rollator/walker. I am 65 years old and since my PMR diagnosis have had to use one. My orthopedist tells me that I am avoiding some of the bad posture habits and joint stress that others who are in pain might suffer because I have the support of this device. I believe that my use is temporary and some days I need it more than others but it does keep me moving. I hope it will get you out of the house. Still believing that we are temporarily impaired and are moving towards total healing. That is my prayer for you and me today. Blessings!😘❤️

Please make an appointment with a hip orthopedic surgeon to make sure you don't have any hip problems. I actually had an impingement between my pelvic bone and my femur. It was solved by an adjustment in how I walked and set. It took the pressure off the impingement and allowed that inflammation to recede. Also ask if you have trochanter bursitis, that can really hurt and cause all manner of problems in your upper legs. I have been off prednisone for over 6 moths and the bursitis is chronic. I am treated by a sports medicine doctor now. Initially my Rheumy gave me steroid injections for the bursitis. I actually self-diagnosed the bursitis then saw an ortho for a medical diagnosis. Please go after the pain areas one at a time and see other specialists. I did and discovered that even if PMR is the initial cause of the problems it may no longer be the only problem that needs treatment. No doubt that PMR caused my impingement to surface and no doubt PMR caused the bursitis, but oral steroids were never going to solve these problems.

I am now on Kevzara for 5 months after two years of being on prednisone and finally on July 1 ‘24I tapered off prednisone . 14 months ago my legs began to get weaker and weaker. Now standing from sitting position is very difficult as is climbing up and downs steps. Forget about getting on the floor to play with my 9 month old grandson .
My c reactive protein and sed rate are normal on Kevzara
My RA doctor prescribed tests as though I am starting over. Started with a physiatrist who is ordering x ray of all my painful areas. Neck shoulders knees and ankles It is assumed I have PMR under control. It could be and most probably is corticosteroid myopathy. It is so limiting. I must say I can walk and sit , the two activities I do most. I exercise and stretch every day.
I asked my RA doc about testing for cortisol numbers. She said no. I was surprised especially since in the month of August - Sept I lost 7 of the 20’lbs I gained I thought the reason was my adrenals kicked in If my tests come back negative I will assume I have Cory o steroid myopathy

It sounds like you need a more thorough assessment. The steroid complicates things because it definitely causes muscle damage and weakness but it sounds like you have something else going on with the pain you are describing

I agree. My wait time for a rheumatologist here in Ontario is 12 months approximately so I’m on my own for now.