Steroid induced myopathy

[ian1951]

I've been on Pred for 5 years for PMR albeit pretty low doses 2/3 mg for a long while. My rheumatologist seems to think the PMR might have burnt out and I possibly have steroid induced myopathy. The aches and stiffness is in similar areas to before. Does anyone have any experience in this?

[DorsetLady PMRGCAuk volunteer]

Now you have asked the question you can see related posts- usually on right hand side of screen - but if not t hen scroll down past current posts.

[piglette]

Do pain killers help the aches and pains?

[PMRpro Ambassador]

There seem to be quite a lot of doctors who ride this hobby horse - but you find out if PMR has burnt out only by getting off pred, and some people have PMR for a lot longer than 5 years. I've been on pred a long time, never been suggested to be that my problems are pred-related and despite being on tocilizumab.Actemra I still require pred.

[Grammy80]

I've been on Pred and Actemra for four years now, initially 80mg per day for some months. A few years ago I had a neurological work-up to assess various symptoms. At the end of an EMG, the neurologist said, "Congratulations, you have neuropathy and myopathy." My loss of sensation in my feet and leg pain...they are still the same and it is just part of me. One Dr. said the steroids did it, another said it contributed. At 83, I'll take that. I do ride a recumbent bike almost every day. I try to be conscious of 'heel-toe-heel-toe' and that helps. My best💞

Put a question out there....and you always get a variety of findings in medicine...there are many contributing and valid factors for each individual (I think).

[Body_bonkers]

It’s early days (only been on steroids 9 months) but suspect I have it. My dose was reduced too quickly and so ended up increasing several times. It felt like the PMR inflammation was ahead of the steroids and with each increase there was more residual stiffness in the hips and shoulders but no pain. As I’ve dropped dose it has eased. Thinking back it also feels different to my PMR stiffness in that it’s there all the time and not worse in the mornings. I wish some doctor had told me steroids can cause stiffness too. The response to steroids is subtle and happens gradually so perhaps easy to spot