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I've been on prednisolone since February; not even two months. I started tapering three weeks ago. I was at 20mg, then 17.5 now 12.5. I hurt all over. My markers are perfect. The dr wants me to continue tapering, but idk if I can. The pain and weakness in my legs are concerning. I do qigong and strong leg exercises at least four a week. I guess ill face this pain head-on and get off the steroids. Thx for your reply. Have a wonderful day. 💞🌺
Replies to "I've been on prednisolone since February; not even two months. I started tapering three weeks ago...."
Way to fast on the taper. Enough Prednisone to eliminate pain then reduce 1 mg at a time or even half mg.Get a pill cutter.I reduced 1 mg every month.Started at 20mgs.Am at 5mgs.
Have had PMR for two years am 83,covid shots triggered it but not cause.
Light exercise not heavy.Go for a walk every day if you can.
Get ready for the long haul,stay positive meditate,there is light at the end of the tunnel.Cheers.
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I'm going to give a few opinions of mine but they are based on information that I've gotten from some very good forums and people that are very well versed on PMR and prednisone.
First, perfect markers don't necessarily mean a thing. I've read a number of times that upward of 25-30% of people with PMR have normal test results. For myself, the labs do track with how I'm feeling. For some, the labs show normal from start to end.
I'm not surprised that you're hurting all over if you've reduced from 20 to 12.5 mg in only 3 weeks! That's an extremely fast reduction of your dose. I'm assuming your initial dosage of prednisolone eliminated most of your pain? If you are hurting all over, your body is telling you that the inflammation from PMR is not being controlled - your prednisolone (pred) dose is too low. There are so many doctors and rheumatologists that get hellbent on getting a person off pred in a hurry but are not controlling the PMR in the process. It's all about the lowest EFFECTIVE dose that manages the inflammation that causes the pain. Yes, pred can have nasty side effects but it is our one and only friend in this battle with PMR. I have been on prednisone for 6+ years now and am down to a 2mg dose - very minimal. In my own opinion it sounds like you need to increase your dose, maybe back up to 20 mg and then start very gradually reducing your dose every 3-4 weeks (never more than 10% down). If the pain comes back or increases it's your body saying the dose is too low.
You mentioned about exercise which is good to try and keep in shape but usually has to be done at a lower level. Too much contributes to the inflammation and a dose that was effective suddenly doesn't work and can push you up to a higher dose to control the pain. Life can still be very good with PMR but at a different pace and level than one would want. I had a very physical job at the start of my journey. I'm still working but had to gradually reduce the amount of physical work I was doing, as too much or too intense work would cause the PMR pain to flare up. I can still do most things but at a much reduced pace from what I'm used to. No more diving into a project!
I've read that around 25-30% of PMR sufferers can control it and be off prednisolone in 2 years. However, the average is over 5 years. I'm a bit on the high side at 6+ years and hoping to be over it by the end of this year. However, I'd be equally satisfied if I was taking 2mg for the rest of my life. At such a low dose the side effects are very minor. The challenge is getting there. Sorry to be so long winded but I really feel that your doctor has good intentions but is causing you to suffer for no good result, and in truth is making things worse.