1. < Polymyalgia Rheumatica (PMR)

Has anyone experienced steroid myopathy?

Posted by myrlyn3b @myrlyn3b, Oct 1 12:53pm

I’ve had what was diagnosed as PMR for 2 years. My pain and stiffness is getting worse as time goes on even though I’ve been on Prednisone for over a year now.
I have the pain and stiffness almost entirely now at the top of my legs, the hip flexors I’d say. That’s apparently a very likely side effect of long term prednisone use called steroid myopathy. I’m still on 9 mg, tapering.
I can barely walk at all. I need a cane and hold onto the walls etc in my apartment. It’s difficult to stand long enough to cook. I hardly go out at all because walking is so excruciatingly painful. I’m looking at walkers today but actually feel a wheelchair would help me more because it’s so painful to weight bear.
I should clarify that I have an extreme feeling of weakness in the upper leg/ hip area on both sides at the front especially.
Along with that is the stiffness and pain.

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myrlyn3b | @myrlyn3b | Oct 4 2:47pm
In reply to @tadatada1 "I am now on Kevzara for 5 months after two years of being on prednisone and..." + (show)
@tadatada1

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

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I’d love to try a biologic to get off prednisone but until I get a specialist I’m out of luck. I’m tapering off prednisone presently and exercising .
My CRP and sed rate are normal too.
It could be steroid myopathy with atrophy of the muscles/ligaments and tendons after 2 years now of very little exercise due to PMR.

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myrlyn3b | @myrlyn3b | Oct 4 2:54pm
In reply to @jabrown0407 "Please make an appointment with a hip orthopedic surgeon to make sure you don't have any..." + (show)
@jabrown0407

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.

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Thank you. Yes I self diagnosed my hip bursitis and also had tendonitis in the hip area. I asked for an X-ray which showed it. I’d had impingement for a decade but it disappeared as far as being painful when I was bike riding and going to the gym up until PMR raised its ugly head 2 years ago.
I agree that there are multiple challenges at this time.

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mtr2601 | @mtr2601 | Oct 4 3:17pm
In reply to @myrlyn3b "I agree. My wait time for a rheumatologist here in Ontario is 12 months approximately so..." + (show)
@myrlyn3b

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

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Do you have access to a good Primary Care Physician ? They could commence some basic investigations.

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edwardh | @edwardh | Oct 5 5:25am

my chronic fatigue lifted within a few weeks of tapering off of prednisone.

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myrlyn3b | @myrlyn3b | Oct 5 12:08pm

Wow! Such good news. Thanks. I hope to get the same result.

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victoriab | @victoriab | Oct 5 6:51pm

Yes I managed to finally stop prednisone early july this year after 25 months I had a terrible time on it within 3 months I lost muscle strength but it was 9 months until It was identifed that I had severe adverse side effects and it then took me until July this year to completely stop it, I see a musculoskeletal physician now who expalined that I have myopathy and need to do regular gentel exercise to build up my strength I have a lot of pain in my hips and knees and somehoe have developed golfers elbow ! Anyway I walk around the blosk a couple of times when I am at work as I sit a lot and as I remember do my exercises given by a physio can do a set of 4 in 15 mins just have to apply myself have been told it can take up a year to recover off prednisone and am not to be prescribed it again unless it is necessary to save my life ! Hope you recover well x

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myrlyn3b | @myrlyn3b | Oct 5 6:59pm

Thanks for your info. Yes I understand that even after getting off prednisone it can take a long time to recuperate and get muscle strength back.
Good luck with your journey.
I’ve started exercises daily now. For me they’re very painful but I’m determined to improve. My challenge is to get off prednisone.

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tiateacake | @tiateacake | Oct 6 11:08am
In reply to @dadcue "Doctors don't tell their patients very often that they have steroid induced myopathy. When you clarify..." + (show)
@dadcue

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.

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I was only talking about this to a physio friend at the gym yesterday. I am now on 8.5 of Pred and very slowly increasing the weights I use in training but my left arm still feels very weak. He says I have done everything right and as I taper the weakness should feel less noticeable. He did laugh when I said I imagined pred teeth eating all the protein I consume before it helps the muscles. But it is a challenge and me and my myopathy have reached an understanding. I know it is there so I have to work harder to shut it up.

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myrlyn3b | @myrlyn3b | Oct 6 1:36pm

Thanks for your response. I feel the same about the protein!
I have a much weaker right arm than my left. I’m slowly getting back to lifting light weights. I’m not a patient person usually but realize I have to take it easy with this situation.

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