Prednisone is like running UP a DOWN staircase

Posted by ag49 @ag49, 5 days ago

Hi all. The unpredictability of prednisone is what causes me the most problems. I know the Myriad of side effects, both physical and mental, are different for each one of us. It seems that the physical is expected with breakthroughs in the dose, especially when tapering. What I cannot reconcile is the profound effect it has had on my overall health. There are days I am able to continue in activities that keep me healthy, both physically and mentally. But other days it's near impossible - either the brain fog wrestles with my physical energy, or the zeal and motivation are gone. I'm at 8.5 mg, a slow taper since April. Before PMR/ prednisone I was a young 75 years - very active physically and mentally. Now I'm feeling older than 75. 😥

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Preciate the comments and helpful links. 🙂

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@besmith57

This might be a silly question but my thighs hurt to the touch. It hurts while pulling up my pants or putting pressure on them. My rheumatologist says it is my back causing that pain. I'm taking 6 mg of prednisone, and for the most part, I feel ok. Could it really be my back causing this pain?

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I am just recently off prednisone after 2 years but as the dose got under 5mg I had a lot of pain in my thighs and my knees hasn't really resolved so am going to a musculoskeletal physician but I am aware my thigh muscles have gotten very weak while on prednisone so I am walking short distances often and doing a squat exercise and hoping it eventually resolves. Prednisone ended up giving me more problems than PMR !! This is a great site for keeping you sane about what you experience with prednisone

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I can't walk for very long without pain. Do your thighs hurt to the touch?

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@victoriab

I am just recently off prednisone after 2 years but as the dose got under 5mg I had a lot of pain in my thighs and my knees hasn't really resolved so am going to a musculoskeletal physician but I am aware my thigh muscles have gotten very weak while on prednisone so I am walking short distances often and doing a squat exercise and hoping it eventually resolves. Prednisone ended up giving me more problems than PMR !! This is a great site for keeping you sane about what you experience with prednisone

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Oh my goodness. I think it might be a combination of the PMR breaking through the prednisone as we taper. I have not been acquainted with this delightful disease long enough to qualify my statement so it's just an observation that I have about my own self. But I will tell you that I used to walk Three to four miles every single morning, early morning like at dawn. And since being on the prednisone I honestly struggle to make even a half a mile. There are some days I can't even get motivated enough to Gear Up and go out the door. It's sad because I was so very active. This prednisone seems to take away the good things that we do for ourselves.
Sometimes the best thing for weak legs is to try to keep up the squats. Even if you just do two or three or five at a time. If you're not able to do the squats, just do the sit to stand to sit to stand 10-15 of those. Go on YouTube if you if you watch things on YouTube and they have exercises for you know different muscle groups for seniors for seniors. It's very important the best exercise to strengthen the leg muscles and for our balance and to prevent Falls is squats. The sit to stand uses those same muscle groups that you do in a squat. They're just safer because you're getting up from a chair and sitting back down. If you can do 10 to 15 those of those at a time and then rest and maybe you know throughout the day you might be able to do some more and then maybe early evening. But try to get 25 to 30 of those in every single day. Eventually the strength will come back. I find that physical therapy helped me tremendously physical therapist especially the ones who have their PHD in Physiotherapy, they really understand the whole mechanics of the body especially with regard to illnesses that attack the muscles. They're quite good at what they do. When I was diagnosed with that was a very first thing my rheumatologist advised me to do. I was advised to do physical therapy two to three times a week for 3 months. It helped. It helped a lot.

##By the way I am dictating this because my hands swelled up today and I can't keyboard. So grammatically if there's punctuation missing or if you read a compound complex sentence LOL 🤣 all of these things are running together because I'm talking and not editing so to speak. I can't keyboard even two words right now. 😉

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@besmith57

I can't walk for very long without pain. Do your thighs hurt to the touch?

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First of all I have to dictate this. So if my sentences begin to run together, you'll know why. I cannot keyboard because my hands were swollen today and they hurt. So let me just say that unless you're used to walking and exercising say for instance doing squats to strengthen the quads and also the glutes, you might experience fatigue in those muscles and some pain. And I just have to say you might have to work up to the point where walking does not bother you. But if you are referring to actual pain I do not know why. Maybe someone else's experiencing the same thing. And I guess like I mentioned before, some of the symptoms that I feel I can't really differentiate between the PMR flares and the side effects from prednisone.

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I was quite active until I broke 2 vertebrae in 2021. I had a spinal fusion in 2022. I guess I am out of shape! I can't stand for long either. I was walking daily until PMR struck. I have tried walking but I don't get too far. I also try to ride my exercise bike. I just don't understand the correlation between my back and my thighs and hips hurting when touched.

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@ag49

First of all I have to dictate this. So if my sentences begin to run together, you'll know why. I cannot keyboard because my hands were swollen today and they hurt. So let me just say that unless you're used to walking and exercising say for instance doing squats to strengthen the quads and also the glutes, you might experience fatigue in those muscles and some pain. And I just have to say you might have to work up to the point where walking does not bother you. But if you are referring to actual pain I do not know why. Maybe someone else's experiencing the same thing. And I guess like I mentioned before, some of the symptoms that I feel I can't really differentiate between the PMR flares and the side effects from prednisone.

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Thanks so much for taking the time to share, I work as a mental health clinician and so every time I finish seeing a patient I try and get squats in and you are right sit to stand also good, just keeping on being active is the thing I try and pace myself as still easily fatigued honestly I wouldn't have taken it if I had known what I was in for !!!

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@besmith57

I was quite active until I broke 2 vertebrae in 2021. I had a spinal fusion in 2022. I guess I am out of shape! I can't stand for long either. I was walking daily until PMR struck. I have tried walking but I don't get too far. I also try to ride my exercise bike. I just don't understand the correlation between my back and my thighs and hips hurting when touched.

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exercycle is a great idea thanks

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@besmith57

I can't walk for very long without pain. Do your thighs hurt to the touch?

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They have done but as the dose got lower they just ache and my knees are very sore i think because of the loss of muscle strength so working at building that up

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@ag49

First of all I have to dictate this. So if my sentences begin to run together, you'll know why. I cannot keyboard because my hands were swollen today and they hurt. So let me just say that unless you're used to walking and exercising say for instance doing squats to strengthen the quads and also the glutes, you might experience fatigue in those muscles and some pain. And I just have to say you might have to work up to the point where walking does not bother you. But if you are referring to actual pain I do not know why. Maybe someone else's experiencing the same thing. And I guess like I mentioned before, some of the symptoms that I feel I can't really differentiate between the PMR flares and the side effects from prednisone.

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"...unless you're used to walking and exercising say for instance doing squats to strengthen the quads and also the glutes, you might experience fatigue in those muscles and some pain."
You ain't kidding. I thought I should try some small exercises to try to get some diminishing muscles back at least slightly. I started with two slow squats and two slow leg rises last week. TWO. For three days after that it felt like I'd run a marathon and it was difficult to sit and stand up from the pain behind and beside the knees. Back to basics for me. No more actual exercises for now, just more movement in general.

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