I have been on 15mg of pred for 6/7 weeks and most of my symptoms have gone but today after doing very little all week I am finding it hard to climb stairs without my leg/ thigh muscles feeling I have run a marathon!! Plus I feel slightly out of breath. Is this normal or something I should worry about. Debby
Stairs are to much: I have been on 15mg of pred for... - PMRGCAuk
Stairs are to much
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Yellowbluebell
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76 Replies
•
Pred can make our muscles weaker and contribute to fatigue. Provided your PMR symptoms are under control you should soon be able to start a slow taper. What has your doctor recommended in the way of tapering?
He isn’t interested in tapering till January! I thought this was because I have appt with rheumy then but he reckons he wouldn’t taper till then anyway!!
PMRproAmbassador
Have you not been doing stairs in the meantime?
No been doing them ok and even though not running up them they haven’t felt like today
I do have days where I struggle more with the 2 flights of stairs than on others. What were you up to yesterday?
Nothing except saw dr at 5.30pm. Give or take an hour because she was late!!!
Hatching a flare? That happened to me in September - it was just my thigh muscles that were so sore after a slightly longer than usual walk on the flat, sore as in having flu to start with and then I realised I was struggling to walk at all. Then the other signs started to appear.
Maybe as not feeling brill and now the pain in groin has come back? Oh the thrills of prm. Should I up the pressure or just stay with my 15mg?
Sounds very suspicious. Only you know how much you need.
Might do 20mg for a couple of days and see how things go. As not about to taper till end of jan it shouldn’t impact on that too much
Hi Debbie, I had the same symptoms when I was on prednisone. It went away when I got off. I'm sure you'll be hearing from all soon. Make sure you do tell your doctor about it, just to be on the safe side. Hope you feel better soon, just slow down...phase of our symptoms.
I have been fairly good at doing nothing since diagnosis apart from a slight blip last Saturday when I got on the zip wire in the park! No injuries but was a little tender the next day.
Hmmm. 😀
I know but it was calling my name and my grandson thought it was hilarious especially when it stopped and the only way I could get off was to just glide gracefully to the floor
Will mention it when I go for results if pee testing.x
I get the same problems from time to time, they seem to come and go at their own whim. The shortness of breath worried me so I posted and got many replies from others who also experience this made me realise it's nothing sinister, just another symptom to manage and wait for it to disappear again. Lucky the Good Ship PMR doesn't require us to climb the rigging 😎
Oh god any more than one flight is too many.!! Might just go up on hands and knees
I get weary legs from time to time and breathlessness. Make sure your blood pressure is ok and give yourself some lazy days. Zip wire! Go granny!!
I have decided to reserve my energy for times I spend with my grandson even though it means I feel knackered the next day. I can have any number of days to recover when he isn’t here.
I did too. I found that he gave me energy. I collapsed when he went home though. Happy days!
I decided a couple of weeks ago that if I only had a certain amount of energy to spend then I would spend it when my grandson was with me. I know I can’t predict when I will be feeling great but if I didn’t waste energy on the mundane I.e shopping, tidying and cooking, when he was due then hopefully he will have good memories in the future. The zip wire was a mad idea but zach was laughing hilariously especially when he realised I couldn’t actually get off the thing without just sliding onto the ground. It wasn’t graceful in any way and apparently there is a video of the deed. I suspect it’s my son in law who took it which means the first time I see it will be when it appears on face book!!!
Me too, after having my granddaughter!
I have PMR/GCA and have a horrible time going up stairs. My thighs are very weak and my right hip hurts way too much. I find myself pulling myself up with the railing. I walk about 30 minutes daily, so I'm not out of shape, just very weak.
I have arthritis as well as PMR/GCA and was referred to to an occupational therapist who arranged for me to have a second hand rail fitted. So on bad days now I haul myself up but am still contemplating a stair lift - budget permitting. But when I visit my daughter I am defeated by her elegant curved staircase and have to resort to hands and knees to the amusement of my grandson and the bemusement of their dog.
Yeah, I also find going up stairs challenging, aching and sore legs, like Yellowbluebell says feeling like I have just done a marathon! I have always been like this since diagnosis, the pred took away the acute pain but not the soreness and aches.
I thought I was fairly fit before this so I didn’t expect just going up stairs very slowly would give me so much grief!
Me too yellowbluebell! It is 14 steps to the landing and then three more. Sometimes the landing seems like a mountain top away!! However there are days that I get up without noticing that I've done it! I wish there were more days like that!!!
Me toox
I have the same problem after going on the zip wire!! Not really🤣😂! but I've been on a trampoline. I shan't be going back on in a hurry.I do get heavy legs sometimes,they feel like lead but usually after a busy day.I find they feel better when I've been out walking though🤔
I obviously had a mad moment but admit I haven’t felt the need to go on the trampoline in our garden thankfully. Next thing you know I might just ride his scooter to the shops!! The sad thing is none of my neighbours would think it’s odd!!
I can relate to your problem. I love my flat but it is on the second floor (third floor if you're American), and there's no lift (elevator!). I also live in a rather hilly area. Often when I go out, I get near home feeling regenerated, but that last haul up the stairs sometimes spoils that feeling. While on pred, I don't have the pain and stiffness of PMR which used to mean that I had to take the steps one at a time like a toddler, but the muscle weakness is nearly as bad, especially if I've had to walk up the hill to my front door. As often as possible I take ways that are downhill, but there is one particular bus stop that means I can't avoid an uphill walk. I have a rest on a bench halfway up and get myself prepared for the weary drag up the stairs.
• in reply toMarijo1951
It is the weakness & fatigue that I struggle with most after 4 weeks on pred so relieved others have same problem. I am having to plan activity around the ability to rest and recover, avoid hills and doing my best to avoid anything energetic in the mornings. All a bit of a shock as previously an active & fit 58 year old but is forcing me to rethink my life!
Marijo1951• in reply to
I've been on pred for nearly 16 months now. The difficulty with the stairs hasn't diminished really but I think I'm more reconciled to it, especially as I seriously considered moving a few months ago and was forced to realise that I'd probably never find another flat as good in lots of other ways as the one I've got.
Yellowbluebell• in reply to
Most of my symptoms have gone but obviously the fatigue can’t be solved by the pred but the stairs were a bit worrying yesterday. I am only 55 and am fairly fit but this has really knocked me. I have accepted that I dont have the energy for everything and so I spend what energy I do have on doing things I really want to do like spending time with my grandson. Everything else gets pushed back.
Lonsdalelass• in reply to
ME TOO. X
Nothing made me as sad and as mad as having to walk up those stairs one foot at a time. Especially when weeks before I was walking many hilly miles. A frustrated PMR guy.
I know. It's cute when you see a little 2-year old doing it, but seems so pitiful in an adult...
It wasn't up stairs I did one at time - that needed hands and knees. Down was relatively easy - that was one step at a time...
Yes going down is not a problem at the moment but I actually try and avoid the upstairs until I need to go for a number of things but I often get up there and forget why I even bothered!!!
How did you manage to go 5 years without pred? If I read a post from you correctly.
If you have no choice you just get on with it. I made a lot of lifestyle changes, and gritted my teeth.
I went to the pool to do an aquafit class every day Mon-Fri, I got straight into a swimsuit and joggers and crawled to the car, showered at the pool and did the class - providing the water was warm enough, if it wasn't I couldn't, my muscles just seized up. I could only use a pool with steps down into the water - I couldn't use a ladder to get in or out. That, plus some time in the steam room, meant I could at least move. It did nothing for the pain. I was able to manage highly adapted Pilates and Iyengha yoga classes after, they helped too.
Without the car I could do nothing - if I couldn't drive to the door and park I couldn't go. I was (wrongly) stopped from driving because of another health problem - and that was the end of the gym as it was inaccessible without taking well over an hour each way and changing buses, not that I could get on one easily anyway. That was when I came here to our flat - bus to London, flight to Innsbruck, train here and then 3 days in bed to recover - where not having stairs to deal with made a big difference. The house we had moved to temporarily had one toilet, upstairs, one kitchen, dowstairs. I could work and have access to a toilet or I could work and eat! The flat has a lift and is all on one level. I researched for hours every day after having gone up the mountain to ski for an hour - 3 short runs with rests on the lift did actually make movement easier! My ski gear was stored at the bottom of the lift, I just had to walk a couple of hundred yards to the bus - our buses have low access, it's no fun with ski boots - I only had ordinary shoes. And I had a 15 minute rest on the lift to the top. I couldn't do much at the beginning of the season but by February I could ski most of the morning. But still only short runs with rests on the lift.
But the pain was always there - nothing relieved that. Until I was put on pred for a trial - then in under 6 hours I could move normally, The hip/foot and hand pain took a few months to go entirely but they got better very quickly.
You definitely changed things around so you could eventually do things you wanted even it not exactly the way you did before.x
...or on the back of a mat is fun...
Don't you get some technicolour bruises?
Of course, should have said tray - we used to do that as kids - weren't allowed though.
Would need a blooming big tray...
Only had the backside on it!
Perhaps that’s what PMRpro meant!😂😂😂
Ha ha!
I know it’s frustrating. I gave up scuba diving when I discovered I got more and more tired whilst finning to a dive site. I really miss it and it at least kept at bay any weight that middle age tried to pile on to me!!
Yes I have had the heaviness in the legs and breathlessness for no reason. On slightly lower doses of pred 14/15 as opposed to 18/19 mg I've felt better. I too find I'm better if I have a regular walk. Zip wire!!!- good for you!!
It really was a spur of the moment thing going on the zip wire and the dismount was less than ladylike but my grandson loved the fact I couldn’t get off the bloody thing!! I am still trying to get my hands on the video!!
Good luck with that!
Hi Yellowbluebell,
When my wife began on 15mg prednisone 2 1/2 years ago, it took about 6 weeks for most of her symptoms to go away, or at least diminish significantly. But her ability to climb the stairs in our home became very difficult. She has been tapering very slowly and is now at 10.5mg daily, and it kept getting tougher and tougher to climb. It got to the point early this year that we decided to sell our home and buy a single story. We were going to downsize anyway as empty-nesters, but this accelerated the process. We have been in our smaller home now for 4 months and my wife feels so relieved to no longer have to climb stairs.
Joe
I am glad your wife feels happier in the new house. Unfortunately we only moved in to this house a year ago and despite the stairs it is our dream home. Although our 100 foot garden might come back to bite me!!
Ouch! 100 feet! Glad you are in your dream home, though. 22 years ago when we bought our house we kinda thought it would be our last home. I guess we should have thought at the time that stairs would eventually be difficult to negotiate, even without PMR. Our big yard with a pool - had to say goodbye as our capacity to maintain and even to use it became a chore. So now, a very small yard - not a dream home by any means, but at least it's new and no need to worry about fixing stuff that is breaking down. I wish you the best in your quest to taper your pred.
Joe
Thanks joe. We had a pool installed last year not long after moving in and it’s been fairly easy to maintain so far but who knows what the next year holds and it may have to be made into a pond instead but think the grandson will disagree on that. He spent all summer in it until he was totally wrinkled and had to be bragged out!!! I know what you mean about repairing things and although our house is not new it’s been fairly well behaved this last year and the only thing that’s needed sorting is when the mice made their home under the decking and chewed our lights wiring. I will say I live in the countryside so mice, foxes, birds of prey and hedgehogs are frequent visitors so we were not shocked when the chewing began. The cat thought her birthdays had all come at once though!! Send my love and hugs to your wife. Debby
You never really think it may be difficult to climb/descend stairs as you get older, does it?
Wish we’d thought of it 10 years ago. It would have saved us two very expensive moves.
I know!! If we had known this was coming we might not have chosen this house but I think the stubborn side of me would still have wanted to live in this rural village even with stairs.
When we bought this place we had a list of criteria - had to be shops for at least basics (in fact we have an outstanding butcher and baker, a large and small supermarket), affordable restaurants for eating out when we couldn't be bothered to cook, doctor/pharmacy all within easy walking distance on the flat and a reasonable hospital in easy reach - it is in the next town but walking distance to the train which stops at the back door! A bus and train service that improves year on year - and for which we pay 150 euros a year for unlimited use in the entire region! We hardly use the car.
Sounds like the ideal place.
We think so...
kood
So true, Constance13. We just never project out into our aging years. Even though our move was for my wife, it turned out to help me to as I had knee surgery right after our move. There is no way I would have been able to climb and descent stairs.
Joe
The first of those moves 10 years ago was in fact a ground floor flat (on daughter’s insistence), it was beautiful, half way up a hill facing a lake!! Got it? Only in my late 60s, so no problem.😀
PMR struck 3 years later and very soon after Polyarthritis. Enough said!!😂😂
You just never know - but how do you prepare for the eventuality of everything that can happen to you? Oh well . . . . . . .
You can’t! Though I wouldn’t like to be able to see into the future anyway.
It could be scary seeing what's in store for us I agree!!
You would have managed but it's more difficult. My husband broke his back in the fire brigade and needed urgent Neuro surgery in 2009 and again in 2010. He couldnt do anything he could before including stairs but he decided he would do them on his bottom and as he got more mobile on his hands and knees. He still can not do stairs so we plan around it when outside but when at home he still does it. I did suggest a bungalow but he didn't want to even consider a move let alone one that was down to something that had happened to him. I am stubborn and so is he!! You would be amazed at what you can do when life throws shit at you
As they say, necessity is the mother of invention
Totally!! You never imagine things like accidents and illnesses and how they will effect you. My husband became a fireman when he was 21 before I met him and although it's a job with risks I know he did everything he could to prevent injury.
I have read thru this thread and I am very curious. I have a Question please. For those of you who have been at this a while- once your symptoms have resolved and you no longer take prednisone or are under 3 mg are you sayin the fatigue remains? Do you feel physical therapy to rebuild muscle would help or is that even an option?
I doubt somehow that any of us are off pred. I'm DEFINITELY not off pred! Most people who get off pred disappear over the horizon so you don't hear a lot. Dorset Lady is - and some others.
The symptoms resolve when you are on or above the right dose of pred. They come back if you get too low. The fatigue probably continues as long as the underlying autoimmune cause of the PMR symptoms is active - and then again as you wait for your adrenal function to settle down.
Physical therapy - in the form of suitable exercise - to maintain and then build muscle is important and is recommended in the guidelines. Do we get it? Not necessarily. And walking is a good basis for everyone. Then it is up to the individual.
Thanks PMRpro and Understood - I am asking about those who are down to 1 to 3 mg and all pain symptoms have resolved though they are still doing a dead slow taper, do they still have the fatigue. It seems from what I am reading that the fatigue never really ends.
As I said, at that level it is just as likely to be slow return of adrenal function - that is said to take another year even after stopping pred altogether. If you want to know what others on low doses feel you need to start a new thread - only people actively following the thread will have seen your question.
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