Steroid myopathy or PMR..? What’s the difference - PMRGCAuk

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Steroid myopathy or PMR..? What’s the difference

11 Replies

I’ve checked some earlier threads on this, but I’m confused...

I guess we generally understand what we (those on the trip) mean by PMR pain. In my experience, it differs from OA. It’s not also different to ‘nerve’ pain...it’s less intense. Not better, just not the same.

I had a phone consultation with GP yesterday to ‘agree’ a PMR revised plan...I’ve previously had rheumy referral. Bottom line, any views on how treatment with steroid affects muscle pain?

I told go that I have intense muscle pain, particularly in biceps, after use. Nothing dramatic, I owed the lawn with a power mower. Easy, low impact, I thought. But some 12 hours later, biceps on fire, then throbbed all night. Checked DOMS...put it down to that...then when I mentioned in passing to GP she opined that it’s steroid induced.

Any ideas please? I realise it’s all part of this complex steroid conundrum, but I’m wondering about the point (again) where steroids may be doing more harm than good.

I’ve just restarted a slow programme from 25mg to 20mg. Currently on 15mg. Symptom control acceptable...

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11 Replies
PMRpro profile image
PMRproAmbassador

Them and their steroid myopathy!! If you have that it is likely you will notice wasting of the muscle involved - I certainly did when I developed it when on methyl prednisolone. My legs were weak but NOT painful and my trousers hung on me.

And haha - power mover maybe, easier maybe, but my biceps struggled with holding a mobile phone to my ear when I wasn't on the right dose!

What dose? Your final paragraph doesn't make sense?

sciencedirect.com/topics/me...

agrees with my view - myalgia is mild if present at all and the main symptom is proximal weakness and muscle wasting.

in reply to PMRpro

Thanks PmrPro. I’m just trying to get my head round something different. Tbh, when I commented, in passing, about different muscle pain and weakness, she said that could be down to steroids. I asked what she meant and she said steroids can cause breakdown of muscle tissue...My biceps now are approx 50% of muscle bulk 12 months ago and they’re weak. Skin is hanging.

So, I’m reflecting on a different difficulty and how to best manage.

June 2018 diagnosis of PMR after >3 yrs symptoms, 15mg worked in hours, started Pred treatment but efficacy stopped at 10mg. Reduced to nil by Feb 2019. March 2019, symptoms bad, restarted at 20mg for a week, no effect. Left for a month then hit with z25mg which has improved symptoms by approx 50%. Reduced since to 15mg just started this week and intend to maintain for 4 weeks before slow reduction.

SnazzyD profile image
SnazzyD in reply to

Why was it that you had to keep reducing after 10mg when you found that level didn’t control your symptoms?

in reply to SnazzyD

That was my (poor) choice. They stopped working and pain didn’t get worse or better so I decided to stop taking them. Then a couple of months after stopping, it’s all come back and I’ve had to start at a much higher dose to hit it at all.

PMRpro profile image
PMRproAmbassador in reply to

Have you been doing any exercises to keep muscle bulk? If you don't use them they will waste away. It does need to be small weight to start with but get a couple of 500ml water bottles and put some water in and do bicep curls - light weight and just a few at first. If the muscles don't ache the next day, add a bit more water/do a few more, just like we say for all exercise.

Yes, muscle wasting is typical - the Cushing's shape is characteristed as a lemon with cocktail stick arms and legs much as Snazzy describes below! But it isn't inevitable and it isn't as common as a lot of doctors think. And I lost a lot of muscle bulk with PMR no pred - because I couldn't use them as much though aquafit did help a lot. I see Maisie had the same experience.

in reply to PMRpro

Mainly do a few yellow stretch band excercise or worktop pushes for arms. I carry buckets of coal and vacuum which can aggravate later in day. It’s that tricky balance between use and overuse at this stage. I’ll stick at it. Thank you.

PMRpro profile image
PMRproAmbassador in reply to

I'd use the band a bit more, build it up slowly. How about carrying the heavy stuff in 2 or 3 journeys?

What's a vacuum? ;) Split that joy into a few sessions with rests too.

SnazzyD profile image
SnazzyD

My myopathy was not painful, but my muscles just seemed to dissolve and my arms and legs were sticklike in that they had no definition. Before Pred I was very fit with good muscles and this process started about a month after 60/40mg for GCA only. I found that any use would result in a pulled muscle and it took very little to do it.

The first time I went into the garden after the first winter i did 2x5min sessions with clippers. My arms shook for hours afterwards and were sore, like tender to the touch and on movement. I couldn't even get a cup to my lips my arms shook so much. The next few days they were sore as if I had held my hands in the air for 30mins and you get that lack of blood pain...which I suppose is what it is. (I did some army style exercise in my late teens and know that feeling).

I have lost some muscle bulk from under use - I have used the water bottle method to strengthen muscles over time. But if I try and do repetitive movements like clipping or mowing I get the shakes again after a few mins so I rest every few mins and sit down. My neighbour even calls it my gardening chair. I did sit in it and mow the grass one day. I did a semi circle, stopped moved the mower and my chair then did another semi circle. As needs must.

Maisie1958 profile image
Maisie1958

I definitely had problems from PMR -I used to be insanely strong-I was the one at work asked to move the heavy creatures rather than the one man. In one year of undiagnosed PMR (my fault as didn’t go to GP) I lost a lot of strength. Prednisolone allowed me to continue to exercise and horse ride. I still have to be careful especially with my shoulders but I do think it’s more DOMS rather than steroid myopathy-I’m back at the gym and doing classes though at lower intensity than four years ago. I suffered far more without prednisolone than with it - I couldn’t believe how weak I became in less than a year before I was diagnosed -I thought I was just getting older.

in reply to Maisie1958

Thanks Maisie. Yes, I can relate to that.

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