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diana21296 diana21296

Weak Legs

Good morning Eileen and everyone,  I have a friend with a bad drop foot who has had PMR for nearly 7 years and she has been stuck on 5mg of pred for the last 3 years.  She has started to suffer from weak legs when walking and after a certain distance feels her legs won't work anymore.  She can't walk far anyway as she is badly lopsided and walks with a stick. She is 78. She is very stoic and nursed her husband through cancer and is still very active with church activities so is not at home feeling sorry for herself.

She is wondering if the weakness in her legs could be caused by long term use of pred and I said I would ask the forum. She is trying to get to 4.5mg using the DSNS method but so far every time she has tried, she has unfortunately and coincidentally had a fall and due to the pain of that has always had to go back to 5mg.  She is nervous that long term use of pred is not doing her any good although I have told her that such a low dose should not be affecting her as such.

Does anyone else suffer like this?  Is it a common side affect or something entirely different.   In other respects she is fine, not overweight and looks very well.

14 Replies

  • ptolemy diana21296

    A friend of mine, a doctor in his 70s, had an operation to relieve his drop foot. I am not sure if your friend would consider it? 

    • diana21296 ptolemy

      Thanks.  Unfortunately she had an op at the outset 10 years ago but it didn't work.  She has a brace from the States which ties into any lace up shoes which helps to hold the foot up higher to help prevent falling. Am researching extra light small rollators which she could easily fit into the car.   

  • Anhaga diana21296

    I agree that physiotherapy should help improve such things as her lopsidedness.  Pred can cause muscle weakness I've found, although I've always exercised (including physio) through PMR both diagnosed and with prednisone.  Targeted exercises help, and a trained physiotherapist will be able to determine exactly which muscles need the workout at this stage.  I've been below 5 mg for over two years and definitely have lost strength in that time.  The problem is at our age (I'm 71) it takes longer to recover from injury, so I think the very painful back I endured last summer set me back quite far and I'm only just now starting to regain strength.  Your friend's fall will not have helped any of her issues. If nothing else these ailments teach us patience.  

  • celia14153 diana21296

    Hi Diana, saw my rheumi last week complaining of jelly legs. She told me that some people react to steroid treatment in this way and get myopathy in the legs - muscle weakness. It is unfortunately irreversible and they don’t understand why it happens. Even if I knew this I would still go for the therapy because it gave me my life back. And your friend may have something different. I’m just adding to our pool of knowledge! Hope all goes well 

    • EileenH celia14153

      It is not irreversible! I had quite marked myopathy during the 9 months or so I was taking methyl prednisolone, you could see the change in the shape of my leg muscles. Within 6 months of switching to a different form of corticosteroid and building up a modest walking programme (I was on crutches as well at the time) my legs were back to normal. Good targetted therapy should make a difference - preferably preventative of course but it can help afterwards too. 

    • Anhaga celia14153

      I don't know why it would be irreversible.  I sometimes feel like I'm walking through molasses but I have no intention of living the rest of my life with that feeling.  I'll just keep on doing what I can in full expectation that things will improve as I continue to taper my pred. cool  

      Don't believe everything doctors tell you (within reason, of course).  Some doctors will tell you that osteopenia and osteoporosis cannot be improved only through nutrition including supplements and diet, no meds.  Several people posting on the forums have proven otherwise, as demonstrated through their successive DXA scans,cheesygrin

    • celia14153 EileenH

      Thanks for this Eileen - I was a bit dashed and although the doctor is very pleasant, the info rather abruptly thrown into the discussion! I had assumed it was due to the steroid and would improve as I tapered. However, good to have the alert so I keep up with exercise etc. What would we do without you and this Forum for advice based on experience? ( ps lovely tennis coming up!). 

  • Kacee01 diana21296

    Diana,  This is so me, I was diagnosed with pmr April 19, 2010.  I would not take prednisone until I became so full of inflamation, I could not get out of bed or turn over., so rheum.  started me on 15 mg. of pred. Lots of  side effects since that time I'v been on 2.5 mg for 4 years sometime down to 1.25 daily but I always have to go back to 2.5, I am now experiencing fatigue, weak legs, can't hardly pick them up,  I'v always been very active, taking care of my yard. etc. I'm just hoping I can continue getting up and down stairs. Had test run yesterday to see how much cortisol my body is making, Tell your friend I will let you know what test results were,  I want off pred. So bad! Hopefully my adrenals are working., will keep you posted,  Thanks for listening.

    • diana21296 Kacee01

      Oh thank you so much, yes do let us know  how your test results go.  You have done really well getting down to such a low dose.  I am on 7.5mg and suffered terrible fatigue for 10 days while my body was getting used to the drop.  2.5 seems a long way away for me but will keep at it very slowly!  Good luck and hear from you soon hopefully.

  • EileenH diana21296

    Long term use of pred CAN lead to muscle weakness - but it can be avoided by targeted exercises and the guidelines do recommend that each patient should be advised on suitable exercises for them. I would have thought that someone with a drop foot would be a particularly needy case in that respect. Walking with a drop foot is not a natural action and isn't going to do muscles any favours.

    Not wishing to appear rude - but she isn't a spring chicken any more and a deterioration in walking ability does tend to come with advancing age and the higher doses of pred in the past probably didn't help. Has she tried walking with a rollator? That allows a much more "normal" walking pattern than a walking stick and provides a seat for when you need one (it also carries your shopping!).

    She should ask her GP for a referral to a physio, although, if she can afford it, a private session with a physio would probably achieve far more and far sooner!

    The 5mg shouldn't be causing any problems really - she is probably stuck at 5mg as much because of poor adrenal function than anything else and it is a low dose, less corticosteoid than the body makes naturally anyway in the form of cortisol which is essential for life.

    • EileenH diana21296

      I'm sure there are lightweight ones. My SIL's aunt is tiny and very crippled with her hips - she folds hers and slings it in the boot no bother at all.

      Does she try to reduce the dose? What happens when she does?


    • diana21296 EileenH

      Thanks ao much Eileen for quick response which I will pass on to my friend.  Do you think she should have the test done to see if she has poor adrenal function?

      She has a rollator which belonged to her late husband but too heavy for her to fold and lift into the car and she does a lot of driving hither and thither not being able to walk properly.   Will research to see if there are any lighter weight ones on the market.   Have a good day.

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