Simply wanted to report on what happened after I stopped taking Prednisone.
I was diagnosed with PMR in August, 2022 and put on 13 mg of prednisone daily and 70mg of Fosamax, once weekly (to counter the bone loss associated with prednisone),
In the fall of 2023, I finally got down to 1mg of prednisone every other day and at my annual physical in late December, my doctor said I should stop taking prednisone and see what happened.
This week it will be one month since I stopped and I have had no recurrence of any of the symptoms associated with PMR.
Iam back to cycling 20-odd miles several times a week and spending about 90 minutes - on days I don't bike - in the gym rowing, walking on the treadmill, using free weighs and using the cable machine. The slightest twinge in my shoulders send me into a mild panic, but it appears that those twinges are those one would normally associate with weight lifting when you are aged 85. I absolutely do not life heavy weights: my max is 10 reps of an 80 barbell on a Smith machine.
For those who may be interested, my annual physical includes an InBody "test" explained at this link:
My results, for the years 2016 to 2023 are shown in the attached chart. It's interesting to note the drop in Skeletal Muscle Mass druing 2022 and 2023 when the PMR prevented me from exercising as much as I normally did.
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Mansplainer101
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Out of interest, do your PMR symptoms affect your hips or your shoulders most, or both? I had to stop cycling because the pain in the hip girdle caused by PMR meant that I was unable to walk when I got off my bike. Seated activities definitely make me worse.
Interesting. I am the other way around. I'm just at the stage where I am trying to switch those unused muscles back on. Really hope that I will be able to get on my bike in the summer. I loved cycling.
I got off all prednisone in less than a year. Started at 30 in February 2023 and by November 2023 was at 0. Steadily dropped to 5mg, then when I got to see rheumy, and by late July, he put me on methotrexate and Hydroxychloroquine. Kept dropping the pred fast ike every 2 weeks till hit 0. I am now dropping meth from 6 to 5 to 4 for about a month and last week at 0. I still take the 2 hydroxy pills. I have no PMR pains at all. Mid last year my hands and fingers had swollen and it was another reason doc put me on the meth as the pred was not working that great and I am insulin dependent diabetic. Now my left hand middle finger straightens all the way but still feels stiff. Right hand middle finger wont move all the way into a fist, just halfway and still not fully straight. But the associated pain in the fingers is gone.
I felt pain in my shoulders tracing down to those fingers and that is gone too. SO, the nerves had inflammation I think, or were being pressed by inflammation around the nerves. Fingers were numb and burning pain especially bad at night
My hands and fingers were perfect until mid 2023! I think could be related to psoriatic arthritis, as I do have some small patches psoriasis on elbows and occasionally knees and ankles.
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