Hi, after tapering down to 1 (now about a month) I have suddenly started having problems with walking. First I was moving awkwardly and this morning I could hardly move my legs to walk. It was not painful, my legs just would not seem to be able to move. It seems as if the stiffness is coming from where the leg meets the hip joint. I am afraid to go back to the doctor because he wants me off Prednisone and I know he probably would not put me on the higher dose again. The last time I had an appointment he told me I did not have PMR, that I probably have something else. Now I am so confused. I was officially diagnosed with PMR 4 years ago (but had problems for two years prior to that which the doctor blamed on my back). I would hate to go an specialist for my back and start having treatment (possibly injections or even surgery) when my problems could be that I am having a flair and just need to go back on the higher dose of Prednisone. Has anyone had problems with moving their legs when tapering off Prednisone or even before being diagnosed and put on Prednisone. Is
Is difficulty with walking a symptom of a PMR flair - PMRGCAuk
Is difficulty with walking a symptom of a PMR flair
When you were "officially " diagnosed with PMR what was your esr and crp? What dose of pred were you given and did it eliminate the symptoms in a short time? What were your symptoms at the time.
If your GP says it's not PMR then what is the "something else" ? If he can't answer then he should refer you to someone who can.
Hi, sorry it took so long to answer you. Here is what I found. At first diagnosis SED rate was 48 and CRP 0.2. Today SED rate is 29 and CRP is 3.1. Was never given higher than 20 mgs of Prenisone. The first cycle was to taper off in only 2 months. Right away my SED rate was drastically reduced to 11 SED and then just as fast up to 48 when I stopped my medication. Doctor asked me why I stopped and I answered, "I used all the pills you gave me." He never advised me to either call in for more if I had symptoms after tapering off. He led me to believe that that one cycle of Pred would cure me (what a fool I was). So, he put me again on 20 with a slower taper (I can't remember what, but I think it was for about 6 months. Again the same from 48 down to 11 really fast. When I finished tapering after the six months my symptoms came back right away and off we went again. This time I was up and down, up and down for about three years and the SED rate was never low again but never that high again either. Probably just stayed between 13 and 33 (probably lower when I started with P again after tapering off each time. Now, as mentioned I just finished tapering and symptoms returned. My SED rate is 29 and doctor said that is "fine." But my symptoms are just as bad and I can hardly walk. I still have a lot of 5's and some 1's but they won't last until I see the doctor if I start at a high dose again (15 was last start). I am thinking about tapering with a start of 5 and using the 5, 4.5, 5, etc. method and my pills should last. I started this on Sunday and feel a lot better but a little stiff when walking. I am a loss of what to do. I hate to start at the beginning again. Sorry this is so long. Hope you don't give up until the end. I guess I am just venting. At this point, it all feels hopeless and I can't decide what to do. I can't rely on my doctor and need to articulate my concerns to my regular GP who will be taking over my care now and get him to understand more about PMR and tapering because I really believe they don't have a clue about even PMR. Robin
I had problems with walking. I became very slow, like Frankenstein!! My pelvis became very painful and couldnt get things to loosen up. I could not lift my legs either. I hope you get sorted one way or another. Let us know!
I have very painful sacroiliac ligaments, but I find That all is solved when I wear a sacroiliac belt.
It is possibly not PMR itself but a result of the way the steroids can weaken our muscles. Can you get an assessment from a good physiotherapist?
The penguin walk - yes definitely. I agree that you need a good Rheumatologist who understands these diseases.
Definitely a "penquin walk" with me. Thanks for validating my thoughts.
Yes, I often have 'penguin walk' too, and I had/have GCA (dx Nov 2016). Combination of steroid-induced muscle weakness + long-term lack of exercise due to fatigue etc. Now down to 4mg pred, and still pretty knackered.
I haven't found the rheumatologist I encountered to be of much help, and the medical profession generally seem somewhat of a mixed blessing in this context. But my GP did refer me to an NHS physiotherapist who has been a tonic. He's a bit eccentric and totally unorthodox - doesn't believe in conventional physiotherapy, But he has introduced a bit of hope and optimism into the situation. Asked a lot of questions, did a lot of talking, gave me a resistance band, demonstrated a lot of movements I might practise whenever I feel up to it, no pressure, emphasised the importance of enjoying the movements (gentle bopping around?) and asked me to keep coming back to tell him how I'm getting on. Just what I needed, I think. We shall see!
Oh, and he agreed w the importance of frequent standing up. Whenever you remember, just stand up a few times. As often as possible. Onwards n upwards.
Good luck.
I have been on 1 mg of pred for @ a year and I started having pains w legs esp at night. Maybe IT has returned.... the experts will weigh in soon.
One of first symptoms of PMR was trouble walking for me
I have had problems with walking. My cement legs I call them. Not pain so much but They feel heavy and muscle-sick. But I haven’t had that for a while though.
I have had this problem intermittently. It seems as though when I "overdue it"; that is, more activity than I am currently capable of, I find getting up from a chair or bed and then walking somewhat awkward at first and then once I get going the awkwardness subsides. Don't know but this might be early warning of a pending flare.
Sometimes i have cement head! 
Certainly have the Frankenstein walk when I get out of the car. You are at a very low dose of pred so it could be a flare if you have passed the dose that was keeping you free if weak stuff legs. A physio can do some mechanical testing and give you some gentle strengthening stretches. I think for me trying out of the car after a journey of more than 5mins will always be an issue, but I know it's for several issues I have pre-existing PMR. If you don't think it's PMR then you need to sort it. Do pain killers work or do you think trying a burst of extra (,up to5mg) for a couple of days might help you determine what is going on? I hope you get an idea of what is going on. 🌻
Hello, my name is Eileen and I have just been diagnosed with PMR although I have been in pain together with stiffness for about three years. My legs are so stiff sometimes that they feel they are not part of my body. I am due to start on 20 Prednisalone tomorrow for 5 days reducing to 15 for 10 days. I am anxious about side effects but have to hope they will be okay and help to reduce the pain and stiffness. Than you for reading this.
If the steroids work it should be like magic, if they don’t work you can always just stop with no problem within the first week or two.
Hi Eileen
Not many people may pick up on your reply in this post as it’s an old one but if you wish to copy into a New Post/Thread you will get more replies.
Welcome to the Forum
Kind Regards
MrsN
Hi, go to the Home Page & at the top right hand corner you should see a Blue Oblong Button that says ‘Write’ just click on there. (That’s if using your phone) but it’ll be on the Home Page if using your PC
Hope that helps.
MrsN
Not what you're looking for?
You may also like...
PMR/Suspected GCA and a flair?
Walking with PMR
Relationship of PMR and Prednisone
Shingles and Prednisone
I'm back with a diagnosis of PMR
Related Posts
Adrenal testing with PMR
Living with PMR with no prednisone
A Detailed History of my PMR Journey
PMR and difficulty tapering prednisone. Moderation team
