Weak wobbly legs update number 2

[Janet57]

I feel very lucky to be getting face to face appointments with my GP. Saw her again yesterday for a follow up to my weak legs issue. We had thought PMR flare and/or a B12 deficiency. So yesterday she gave me a full physical check of my leg strength, knees, toes etc. Full bloods. Then said she’d had a case conference with the team about me (crikey). So another possibility has reared it’s head. Steroid induced myopathy - as I’ve been on steroids since 2013. I’m going to read up but has anyone here suffered with this or has any links for me to read. GP said she was going to refer me back to rheumatology and also start a slow reduction of pred. If the bloods come back B12 deficient she will give me some injections. Let’s see what happens. I’m sure quite a number here have been on steroids for a while so I think this will be an interesting one to see how it turns out.

[DorsetLady PMRGCAuk volunteer]

A search for steroid myopathy brought up this post from a month ago - which may give some answers-

healthunlocked.com/pmrgcauk...

[Janet57 in reply to DorsetLady]

Thank you DorsetLady 😊

[PMRpro Ambassador]

I had no problem at all with prednisolone but developed steroid myopathy when I was switched to methyl prednisolone - as well as a lot of other steroid adverse effects. When I was switched to prednisone they all resolved within a few months and the muscles recovered over about 6 to 9 months. I have weak and wobbly legs - but more due to other issues than steroid myopathy and of course the lack of exercise during Covid didn't help. I've been on pred fr 13 years.

It is all very well her saying taper the pred slowly - she should have been trying that all along and providing access to physio if you were having issues - it is recommended in the guidelines from the BSR in the UK. If she can reduce the pred now - why didn't she do it sooner? If the PMR symptoms come back with lower pred - that too will contribute to muscle wasting if the PMR symptoms return in force and that stops you walking as it did me originally. What dose are you on at present?

[Janet57 in reply to PMRpro]

Thanks PMRo. I was on 5mg and had been trying to reduce but not having much success. I do exercise - Aquacise at least twice a week and walking. I’d recently been on a cruise to the Arctic and walked 4 times around the prom deck (1mile) a few times. I try to do 9,000 steps a day. This muscle weakness came on very quickly - a matter of days. Upping the pred to 10mg has not improved things. I’m now on 9mg. How would you suggest reducing from this level - the GP was vague.

[PMRpro Ambassador in reply to Janet57]

Have they checked other things like spinal problems? Seems strange it happened so suddenly.

Reducing here isn't that different from any other situation. The limiting factor is going to be adrenal function. How long is it since you went up from 5mg to 10mg?

[Janet57 in reply to PMRpro]

10 days at 10mg and today 9mg. At this stage they are not checking anything else.

[PMRpro Ambassador in reply to Janet57]

Then you are just in the window to be able to drop straight back to 5mg as if you'd been looking to control a flare. Some of the others like to do it in 2 staeps, couple of days at 7,5 and then to 5mg. Up to you,

[Janet57 in reply to PMRpro]

Thanks for your help. I’ll do the 2steps.

[piglette]

I have steroid myopathy in my legs. A rheumatologist said “you would expect that”!

[Janet57 in reply to piglette]

Sorry to hear that Piglette. Not helpful at all. I’m sure most don’t really understand this condition.

[piglette in reply to Janet57]

I go swimming which helps.

[Janet57 in reply to piglette]

Yes, I do too. It’s always helped. At the moment though the legs are so weak I can hardly walk 🥺

[piglette in reply to Janet57]

My problem is steps