Steroid myopathy

[Smithie49]

Hi and a Happy Christmas to you all. I saw a post mentioning steroid myopathy which I'd not come across before. I've had PMR for 2 1/2 years and gave had several flares. I'm presently on 7mg but am extremely stiff in my thighs. Walking used to ease the stiffness but just aggravates it now as does getting up from sitting or playing tennis. I thought I might be having another flare but wonder now if it's myopathy. My thought is to slowly taper my pred dose to 5mg over 2 to 3 months and see if there is any difference. Also I'm due to start methotrexate in Jan. Should I do this now or wait and see how the reduction goes?

[PMRpro Ambassador]

Is the stiffness better at a slightly higher dose? Often stiffness is a first sign that the dose you are at is slightly too low for the disease activity at that time.

[Smithie49 in reply to PMRpro]

Hi PMRpro. Thanks for your answer. I tried increasing my dose to 9 mg on suggestion from the rheumatologist but it made little difference. In the past I've increased by the 5 mg suggested on this site and then tapered. The stiffness has always been there except when the dose was raised short term to 10 then 15mg. However, it was bearable and easy to live either. This stiffness feels more acute and is affecting my activities which I don't like and will stamp my feet in frustration 🙃!!!!!!!

[PMRpro Ambassador in reply to Smithie49]

My hip stiffness is mainly due to low back problems and bursitis - have they been ruled out? Pred doesn't help a lot there, at least, not oral pred, Steroid injections might,

[Smithie49 in reply to PMRpro]

Many thanks. I'll check when I speak to the rheum or GP. I've had various muscular back pains over the very many years so I don't know what's doing what any more. Could be a lot worse 😕

[Merryfield in reply to Smithie49]

I can ease hip stiffness by stretching my lower back. I bend over toward my toes.

[Smithie49 in reply to Merryfield]

Thanks. I'll try that. I do a yoga class and do a short walk every day but the stiffness gets worse as I walk. It's odd 😕

[Merryfield in reply to Smithie49]

Mine too get worse as I walk. I have to stretch repeatedly.

[Thelmarina in reply to Smithie49]

Before diagnosis I increased my yoga practice thinking it would help and it made things worse! So what you describe raises a little warning bell. For me it was a symptom of PMR. However I am 77, been on steroids for 6 years, now on 7.5mgs. My stiffness is probably due to age - it reduces over the day and a very gentle yoga practice (on my back on the floor!) keeps me flexible. You sound as if your back problems over the years are muddying the waters. Does paracetamol help? I would be so tempted to up the dosage to the level that eases the symptoms over Christmas. Then see how the impact of Methotrexate works. There may well be other issues contributing to your situation that need clarification and other tests. Good luck! ❤️

[Smithie49 in reply to Thelmarina]

Hi Thelarina. When my PMR started, and until recently, the stiffness wore off as the day progressed but now it's there all the time. The front of my thighs are worse affected and they get worse as I walk. So I set off feeling OK then am in some discomfort until I can sit down. Rising is then again unpleasant. I haven't tried Paracetamol for this as it's not really pain. Maybe I should try. The only doses I've felt oiled and free of stiffness were 20 (typo on the 10 in my previous bit) and 15mg. After that stiffness crept back but not badly enough to stop me doing the things I love. This is beginning to impinge 😞

[Purpleprimate in reply to Smithie49]

I was diagnosed with polymyalgia, at one point upped my pred dose from 12mg to 20mg & although it did make a slight difference I still had pain in my legs. Saw a new rheumy who said he thought I had Myositis which has been confirmed by a neurologist but as yet not the type. Had a muscle biopsy but because of being on steroids for over 3 yrs was inconclusive. Still on pred at 13mg & determined to lower it .5mg every month or so, also on mycophenolate . I'm not sure how old you are but don't allow your muscles to atrophy as you will get loads of other problems, even if it's painful to keep them strong.

[agingfeminist]

You have had really useful replies. I just want to add a note about steorid myopathy...which my doc says I have,,,my muscles became severely wasted at a high dose (60-40mg) and 4 years later show little if any signof improvement. lifting a tennis racket with one hand would be a challenge. Walking twice round a tennis court would be exhausting.

Hope you find a way to zap your pains.

[random901 in reply to agingfeminist]

Aha. Steroid myopathy might be what I am experiencing. Thanks for this. Will add the possibility to my list of things to discuss with the rheumy next Wednesday - have been called in for an "urgent" appointment. Still on 30 mg pred for GCA. Apparently I have every side-effect going, emotional and physical 🙄

[PMRpro Ambassador in reply to random901]

There are 84 listed side effects - do you really have them all?????

But just a note: I had PMR untreated for just over 5 years and I can promise you, that caused quite a few effects that are usually blamed on pred! They included weight gain, mood swings, sweats, poor sleep and whole load of other unpleasantness.

[Smithie49 in reply to PMRpro]

😄😄😄😄😄

[PMRpro Ambassador in reply to Smithie49]

Did you see the bit I just added?

[Smithie49 in reply to PMRpro]

Oh. That sounds lousy. I only read the first paragraph. Have you got permanent damage from being untreated for so long? Or like many, is it impossible to say what has caused what?

[random901 in reply to PMRpro]

I'll start counting ... Think the rheum advisor may have been exaggerating! But certainly weight gain, extraordinary mood swings, poor sleep, facial hair, dribbling (for goodness sake!) weak muscles ... now need another coffee before continuing. Merry Christmas, PMRpro!

[Smithie49 in reply to random901]

😒😒😒😃😃😃

[PMRpro Ambassador in reply to random901]

DRIBBLING??? Though somehow - there was something pre-pred there too ...

[random901 in reply to PMRpro]

I think it's connected to the moustache I seem to be developing at the corners of my mouth ... and there are fairies at the bottom of my garden 😁

[PMRpro Ambassador in reply to random901]

I only got a moustache and black beard when I was on Medrol/methyl prednisolone - together with a load of other nasties, Went to prednisone and they all disappeared, hadn't had a problem with prednisolone either.

[Merryfield in reply to random901]

lol. i have random hairs near my eyelids! i adopted PMRPto’s Braun epilator and use my tweezers and enlarging mirror as well. Arms so hairy I am thinking of trimming them. My head hair is so thin on top, am considering a toupee. So fun!

[Raewynne]

I have recovered from steroid myopathy.It happened when I started on prednisolone on very high dosage .About 80mg for Temporal Arteritis.I couldn't lift my legs off the floor.It was awful. My muscles just disappeared. I was unable to walk.It took months to regain strength but it did.Thank goodness.I bought myself a scooter to get around.I didn't want my husband to have to push me around in a wheelchair.

My kiniesiologist was a great help to me.

[BarbB]

I, too, suffered from muscle stiffness and pain esp in my thighs which worsened with walking, especially uphill. This was different from my initial PMR pain which was specifically in my hips. My rheumy tested me for elevated CK (creatine kinase, a byproduct of muscle breakdown) which was ELEVATED. She then tested me for autoantibodies to muscle cells which I did not have (thank goodness) so it was probably due to steroid exposure.

I became more motivated to get off the prednisone which took me 2 years to taper from 5 mgs down to zero. Once I got down to zero my CK level was tested again, hovering just over 200 which is better but still a bit higher than normal.

My understanding of PMR is that it doesn’t cause direct muscle inflammation, but affects the connective tissue and bursae around the joints. I really felt that thigh pain was off, esp without any more hip pain!

[potterylady]

I too have muscle wasting. I also have a very hard time walking up hills. When I walk on flat surfaces, I do ok for about 20 to 30 minutes. I also use my pilates machine about twice a week which helps keep what little muscle I have. It's a life saver for me. I've finally made it down to 13.5mg after having to increase back up to 35 last spring/summer. Hoping to go down by 1mg a month for a few months.

Oh and hair! I have started shaving my arms and waxing my face. But the hair on my head is so thin and falls out in chunks. At least I can walk and not go blind!!