Has anybody here ever suffered with steroid induced myopathy

[susieq051]

Just wandering if anybody suffered our is suffering with steroid induced myopathy. Because right now that is what I am suffering with and I really needs some help. I have Pmr and GCA and right now I am 45 mgs of prednisobe.

[SnazzyD]

Hello, do you mean it has been diagnosed as such or you are noticing your muscles have reduced?

About 3 months in I really noticed that my muscles had ‘dissolved’ alarmingly especially in my arms and legs. I became weak and muscles were upset with the slightest thing, even lifting a kettle. I also had TMJ problems, sternocleidomastoid amongst others. I just lived with it and it reduced veeery slowly with dose but now at 0.5mg I am still not as bulky as before. I just ate protein with every meal, potassium contraindications foods and the usual supplements like magnesium, Co-enzyme Q10. Sometimes it can be very severe and needs medical attention. I know someone here had to have a hospital stay and a sort of rehab program.

[susieq051 in reply to SnazzyD]

Not diagnosed yet because all my symptoms actually point to polymyosysitis where the large muscle in upper arms and upper legs are effected. Will have to wait and see. I know I need therapy water or other.

[PMRpro Ambassador]

I developed it very rapidly when I was switched to Medrol/methyl prednisolone - my trousers hung on my thighs within a couple of months. Under other circumstances I'd have been pleased as a great aunt once told me I had "good understandings" - which I suppose is less hurtful than "thunder thighs". I have no such problem with either form of pred. However, although I was on Medrol for more than 6 months and for a lot of the time was on crutches because of an achilles tendon problem (also Medrol related) my muscles did return to normal once I was switched to prednisone which I have been on ever since (6+ years I think).

It is important to keep some form of exercise to reduce the risks - and some guidelines do emphasise the need for tailored programmes to avoid it. Walking is the obvious place to start but speak to your GP about some appropriate rehab physio,

[susieq051 in reply to PMRpro]

Thanks I have to talk to him about therapy I had been doing on my own but things just keep getting worse.

[scats]

Last year my dr referred me to a rheumy because after nearly 4 years on pred I had not managed to get below 10mg and the pains in my legs were no longer responding to it. Rheumy suspected myopathy and perscribed physio.

I was given a very gentle exercise program, concentrating on my thighs, where the pains were, straight leg lifts, high steps etc. I was very much in control of how many repeats I did and it varied daily. I also walked daily when I could. I no longer have physio and am left to continue by myself. I have invested in a mini exercise bike which can be used in a reclining position, similar to the one at the hospital.

The whole process is a balancing act because if I feel more able and increace the number of repeats I am likely to suffer DOMS the next day or two.

[SnazzyD in reply to scats]

I had the same problem as exercise, even light, had pay back. The only thing I’ve been able to do reliably is walk.

[susieq051]

Thanks that is my next step getting the doctors to send to therapy or water therapy