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I think I have PMR and I’m terrified
Polymyalgia Rheumatica (PMR) | Last Active: 1 hour ago | Replies (85)Comment receiving replies
"Then my doctor said, “Slow down buddy. We don’t want you taking that much for too long.”
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Thanks @stonewheel ---- Best advice ever! Stressing over it just adds fuel to the fire. You are relatively new ... how are you doing?
Everyone will be fine simply because we already know more than I did when I was first diagnosed. Take the prednisone... get PMR under control and into remission... then taper off prednisone. Just don't take prednisone too long but a couple of years at lower doses should be okay. The jury is still debating whether or not 5 mg or less does much harm.
https://www.everydayhealth.com/rheumatic-conditions/tapering-off-steroids-when-you-have-polymyalgia-rheumatica/
Replies to "@martyn "Then my doctor said, “Slow down buddy. We don’t want you taking that much for..."
@dadcue (and @martyn FYI)
As you know, I started feeling it this time last year.
Toughed it out until October. Began 40mg Prednisone late Oct.
DVT in December.
Rheumatologist got Kevzara approved end of January due to DVT.
Fast taper began in April.
Down to 5mg in May.
It’s the end of August and have been taking 1mg for more than 2 weeks. Loaded weekly pill box this morning alternating 1, .5, 1, .5mg… every day for a week.
Next week all .5mg and 0mg after about 10 days.
Goal was to be off Prednisone by Sept. 1, but probably won’t happen until mid Sept.
Tried Kevzara at 3-week intervals in June-July, but that didn’t go well. CRP rose a bit and I felt it.
Sticking with 2-week self injections (no pun intended) until the end of the year 2026. 2027 will reveal itself.
@martin, I treated this, PMR, like it was boot camp. Learn all you can and apply what you learn. You know the goal. Set small goals to get there. There is plenty of help here.
@dadcue I may have mentioned before, not sure, but my Aunt, who turns 91 next month has been on 4mgs pred daily as a maintenance dose for over 20 years for PMR. My rheumatologist has told me 5 mgs and below is a common maintenance dose not just for PMR and GCA like I have but many other autoimmune diseases. I'm at 6 mgs trying to get back to 5 after a flare and if I manage to get there I will stay there for quite awhile. My bloodwork is overall stable but have awful fatigue which I think is from the adrenal glands trying to wake up.
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@dadcue I found that my metabolism only returned to normal about a month after I finished taking prednisone. While I was taking prednisone my metabolism felt sluggish, and I never knew what to eat or how much. After I recovered it seemed like my body started digesting food effectively again and burning off excess energy, instead of storing it away as fat. That was the biggest problem for me of low dose prednisone, plus the exercise resistance we discussed.