Since being diagnosed with PMR 11 weeks ago, (I’m taking 25 mg of prednisone) I find that walking just a short distance is so debilitating. My legs move as if I’m a 100 years old.I have no stamina and all my movements are in slow motion, including the movements in my upper body.
Why is this ? Does anybody know what’s happening?
I was on 80 mg of prednisone on September 6, 19. In three weeks I could hardly go up the stairs on our vacation and I was down to 70 by then. Now that I’m at 15mg the stairs are abut better.
It’s the prednisone for sure.
Hopefully it will get better for you as you slowly taper.
Have been o n prednisone for 3years plus for pmr and I still have trouble walking. I am now on 13mg trying to reduce to 12&1/2 mg.
Some days are better than others. My pain is in my hips and top of thighs. Also the thighs just get so painful they give out. I think it is the pmr. It kind of moves around in my body and the days it sets in my hips and thighs are the days that I have trouble walking.
It is pretty maddening.
Good Luck
Some of us call it the penguin walk, because it’s a sort of shuffle with a slight side to side motion. Pred isn’t curing your illness it just helps with the inflammation/ pain and stiffness. I felt that everyone was staring at my slow, waddling progress at the doctor’s surgery for instance. It is early days for your disease and the exercise you take should be moderate. Eventually you will be able to walk further, in a much more normal way. You are on the top dose for Pred with PMR. Usually you would begin tapering after 4-6 weeks weeks. It doesn’t seem as if you are ready. I would talk to your doctor to see if more relief can be obtained. Let us know how you get on. Pred itself can give you “ concrete legs”.
Prednisone does that. I can swim. I can kayak. But I can hardly walk a km. Just feel exhausted. So I swim. Started at 60 in October 2018. Now on 16. GCA.
Morning It’s very frustrating after 2 year this still plagues me shuffling is how I describe it it will go with 25mg a day but you will have relapse, don’t let it get you down try to stay positive. This site is great at getting advice and support. If you have been an active person it’s ll the more galling.
Best wishes
Martin
Stick with it but plan short walks with lots of benches en route for rest stops. Last September I was only able to walk very short distances and was was waddling like a penguin but am now just about back to normal although still slow as get breathless. Good luck
I had PMR for 5 years pre-pred and I can assure everyone who blames the pred that PMR itself is also very capable of creating the same situation!
I have been on doses of pred between 10 and 15mg for years now with only occasional forays below 10mg. Most the that time I have walked normally, no sign of a shuffle or penguin walk at all, even on a bad day. In the last couple of weeks I have been forced to walk rather more than usual and I am also having a flare - and my walking is like it was in those first 5 years without pred without me having changed the dose. It is the effect of the PMR on the joints and muscles, probably the impairing of the oxygen supply is part of it since if I walk much more slowly than normal I walk OK, if is only if I try to go faster that my gait deteriorates.
Part of managing PMR is pacing - not just taking the pills:
healthunlocked.com/pmrgcauk......
Pacing, resting at intervals when out for a walk will increase the distance you can manage but you also have to build up slowly and train your muscles to their new normal.
Hi Denis
You’ll see some of us have difficulty in walking before & even after starting Prednisolone.
I’m a long time PMR’er & currently it’s not how l walk but having the breath to walk any distance.
I’m currently trying to build that up......
What l did originally & have started doing again is going to Garden Centres & using a trolley 🛒 to lean on, l would plonk my bag & my coat in it, as l was & am currently having difficulties carrying my bag n wearing a coat.
I used to do the same at our very big M&S then stop for a coffee, then walk a little further.
It’s still very early days & a bit like the old saying, ‘don’t try to run before you can walk’
Good Luck 🍀
MrsN
Hi Denis61. Wish I knew the answer. Two and a half years on, at 7 mgs and my walking is still 'pants'! I take gastro coated pred so it takes a good few hours to get into the system. Mornings for me is the 'PMR shuffle'. My best time is from 2pm-6pm so I do activities that require walking then, including docs appointments. Even still it is short distances with plenty of rest breaks. The back of my thighs has always been my Achilles heel! I have just accepted this as my current norm.
Currently it is my achilles tendon that is my achilles heel ...
Have you ever tried taking the enteric coated pred at night so it is in the syste 6 hours later when you need it?
I did take at night for a couple of months, but my Rheumy went ballistic, (he is normally very mild mannered), when I told him. Insisted I reverted straight away to morning dose. Even though I was on 12.5 mgs at the time, his argument was that taking nightime dose would interfere with adrenal function later down the road.
Not if it isn't absorbed until after midnight - so it depends what time you go to bed I suppose. I take Lodotra at 10pm, but it is not released in the stomach until 2am. If you took enteric coated at 10pm while there was still some food in your stomach it would also not pass out of the stomach for about 3 to 4 hours - and it is not until it reaches the lower GI tract that it is broken down to be absorbed. That is the whole point of the enteric coating, to protect the stomach. And the reason that enteric coated pred can take up to 7 hours to act - it doesn't get to the blood and the parts that need it until then.
This has been my biggest problem all through this illness, pre Pred not so much fatigue, but mobility wise always especially stairs steps and hills, not so bad on the flat. Middle of the day is my best time for anything a bit challenging
A year ago I felt very weak and couldn't walk over 6 blocks. Now starting year four I'm feeling stronger and can walk for 30 minutes. Not sure what exactly changed. Do what you can and keep at it. Currently at 6/6.5. This disease is baffling and very slow going.
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Walking
Walking?
