muscle weakness

[astley123]

As a sufferer from GCA/PMR for nearly 4years currently on 5mgs pred, I have had severe muscle weakness for a long time, Is it due to the illness or the years of prednisolone

[jinasc]

PMR, impairs the supply of oxygen to the muscles. This is why you need to do gentle exercise and pace yourself.

[DorsetLady PMRGCAuk volunteer]

Hi,

Probably a bit of both.

Are you doing any exercise to try and build it up? Many try Tai Chi or Yoga or Nordic Walking. I started Pilates about 4 years ago for same reason - and still going. Love it.

Might be worth discussing with GP, there may be something funded in your area that can help.

[scats]

I had the same problem, my legs have been weak for a long time now and I have been unable to walk any distance I saw a rheumy for the first time a couple of months back who has sent me to physio to strengthen my thigh muscles. So far it has been very gentle and my legs are beginning to feel stronger, but like everything else in PMR it is not straight forward, I still have days when they feel weak.

The rheumy thought it was possibly steroid induced because I have been unable to get below 10mg for 4 years, but it has always been a feature of PMR for me.

[Hidden]

For me it has been a pmr thing but some find pred causes issues too. I noticed it was still in evidence for me earlier today when I had to do 2 flights of stairs (🤪) and had jelly legs even though I took it very steadily. I do have other issues but my thighs have always grumbled with PMR,

[Thelmarina in reply to Hidden]

Grumbling thighs?! Is there no end to these side effects? 😱

[SnazzyD]

I don’t have PMR, just GCA, and the Pred weakened my muscles terribly and very rapidly on high doses. 2.5 years later they have not regained their former bulk. Part of the problem has been having to reduce my exercise, previously high level, to just walking due to proneness to injury. Am having to build up so slowly now because my ligaments are not what they were and I’m still only 56.

[PMRpro Ambassador]

Difficult to say - could be either or both.

I don't think I'd say I have muscle weakness - I'm definitely nowhere like as fit as I could be after the last year: a severe winter followed by illness necessitating being given a pacemaker after a fall which mangled my knee and made walking difficult for a couple of months, then it was too hot for exercise for a couple of months - and now I stubbed my little toe and that makes walking an interesting experience again!!!!

[Thelmarina in reply to PMRpro]

I’m not suggesting you were clumsy but I definitely find that a side effect. I trip over uneven pavements, drop things, bump, stab and bruise myself. Of course it could be the gin.....😉

[PMRpro Ambassador in reply to Thelmarina]

That was certainly an effect in the early days of PMR - I could have fallen over my own feet! Dropping things was worse though. I still don't like walking on uneven pavements or ground. Wasn't the gin then - nor was the toe, too early in the day ...

[Hidden in reply to PMRpro]

Don't mention the toe😜

Sorry had to share. My phone suggests emojis that go with the words I type.... Today a suggestion for toe for 🐫..... A camel for the unemojied. 🤣🤣🤣 Sorry I amuse early before I am fully awake. Blaming pred and extra painkillers. 😊

[Blearyeyed]

Agree with everyone , it's both.

Your Adrenal System won't have fully recovered to take over the role that the steroids had for a long period of time , so that adds to the Fatigue especially on busy days or if you need to react to events or infections and injury quickly.

You were probably less active before but are beginning to try to get more active now as you get closer to the finishing line , and you might be working your muscles at a pace slightly higher than they can cope with yet.

Try building up your physical activity or ' To Do' list a little more gradually and still remember you need to rest and pace yourself as the body is still recovering , and full recovery even after a Disease burns out takes Time.

Good Luck

[Hellyowl]

I have muscle weakness due to the high levels of pred for GCA. Also muscle pain. While pred eases pain for PMR the very high doses for GCA for me caused weakness, stiffness and pain. I was advised from day one to exercise. My rheumy sent me for trial classes. I walk , do Pilates and strength exercises at the gym when I can get there. It is not always pleasant but requires persistence. I don't think my legs will ever be as strong as they were and I struggle with stairs and hills. Consultant said my muscles are weak but I don't have muscle myopothy (spelling?). So worth the workouts.

[PMRpro Ambassador in reply to Hellyowl]

myopathy ...

[Sho-Sho]

I have the same problem - 3.5 years of pred for GCA has definitely caused muscle weakness - I have now taken up Nordic Walking but can only manage 30 min, I get v. fatigued v. quickly but I think that is more to do with the inflammation and adrenal fatigue. Now on 6.5mg and have had adrenal function tested but showed zero activity so I don't think that helps. Gentle Pilates type exercise definitely beneficial, it's just gathering the energy to do it & as ever trying to pace ones life, not always easy!

[Hellyowl]

Pilates is great. I haven't had backache since I started doing it and I spend a lot of time over a computer or driving

[Rene20]

I have been taking Pred gor 9 yrs. I have noticed for at least the last 5 years my thigh muscles are weak if I crouch down or get on my knees I have to haul myself up hanging onto furniture. I am ok walking on the flat but up inclines or hills are difficult.

I walk my dog twice daily.