PMR shaky legs

[Maz48]

Down to 5mg preds now for 2 weeks & legs are weaker & unsteadier than ever. Has anyone else experienced this?

[PMRpro Ambassador]

It could well be your adrenal glands are struggling to wake up and top up the pred with cortisol - and that can make you feel quite wobbly. Any other problems?

Don't reduce further yet - one top PMR rheumy likes to keep patients at 5mg for up to 8 or 9 months to let their body catch up and it des seem to work to make the rest of the reduction simpler. It is a low dose and not one to worry about. This isn't a race.

[Maz48 in reply to PMRpro]

Thank you for that. No other different probs, mainly the shaky, weak legs. Have got insoles for my shoes as I was walking very unevenly, & right foot was getting quite sore & swollen.

[BirmLiz]

Hi Maz48,

Yes I too had shaky, weak legs throughout a lot of my 3 years on preds. I felt quite unstable but when I told the Rheumatologist, she looked at me as if I was barking mad and then got me to walk across the office (all of 3 metres to the back wall and 3 metres back to my chair) and then ignored the problem! I got myself one of those mini exercise bikes that you sit and use and found it did help me a lot - I managed to ditch the walking stick when I got my confidence back.

Take care and good luck with the tapering

[Maz48 in reply to BirmLiz]

Thanks Liz. You just wonder sometimes if it's the PMR or not! Take care 🤗

[Dobermanlover in reply to BirmLiz]

I also have shaky legs - I have to say 'hold on a minute whilst I turn round', people look at me as though I'm daft. It's almost as though I have to tell my legs what to do rather than being able to turn automatically. Really hard to explain the feeling.

[maria40 in reply to Dobermanlover]

Yes, I have this. It's as though your legs can't catch up with your head when you turn in another direction. Has made me quite nervous of crossing roads - especially after two falls.

[Hindags]

I've had the Wobblies, mostly in late afternoon, ever since I started reducing below 15. They go away later. I started doing leg strengthening exercises in addition to stretches. Still happens but not nearly as severe. Still feel weak at that time of day, and slight fleeting nausea a few days recently (tapering from 10 to 9.5) but my legs have felt more stable.

[BirmLiz]

I could never pin down if it was PMR, the preds, tapering the preds or a combination of all three. Before I was diagnosed I had a 14 week wait to see a Rheumatologist and except for hospital or GP appointments, I didn't go out, so don't know if my legs were weak straight off. I recall it was a few weeks into my medication that I noticed although the pain had diminished, I felt weak and wobbly and had no confidence with walking. The mini bike really helped me but also the physio exercises I did for osteoarthritis in the knees. It's now 10 months since I took my last steroid (fingers crossed I won't need them again) and I'm back to walking without having to concentrate what my legs are doing or where they are. Hope you all have success tapering and can 'find your feet' again.

[Maz48]

So pleased for you. Good luck 🤗

[Joan-E-D]

Its just over a year now since I started with PMR and I'm trying to reduce Pred. to 9 mg, this time using DSNS method having had to go back up to 12 mg after the last time I tried. My legs have been shaky on and off ever since I started with PMR, but especially after a walk or going up even a short hill and they ache at the same time. I call it jelly legs. It eases off a bit if I sit down for a while but comes back when I walk further. Eventually if I've walked a bit too far I really find it difficult to control my legs.

[Maz48]

Yes sounds so like me. Often I say to my husband - let's go for a walk. Fine to start with, then you start to flag & legs don't want to go. I think I know where all the seats are in Exmouth & Exeter city centre !