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Hi, As a newly diagnosed PMR patient I need some advice. My rheumatologist started me on 20 mg prednisone. My ESR was 36 and CRP 16.2. He has me tapering 2.5 mg every 4 days, meaning I will be completely done in 4 weeks and 4 days with all the prednisone prescribed. It is then two more weeks until I see him again. According to books I’v read, this seems not the norm, and fast. A friend, with PMR, just finished her taper after 1.5 years. She says if I stop that quickly I will be in a world of hurt. Currently I’m at 10mg a day and starting to feel more pain and stiffness creep in, lasting longer than usual. I’m concerned, and wonder do I follow doctor’s orders, or question his treatment protocol? Anyone out there with similar experience? Thank you in advance.
Replies to "Hi, As a newly diagnosed PMR patient I need some advice. My rheumatologist started me on..."
@franklinlala I agree with @jeff97, I does seem to be a very fast taper. My PMR is currently in remission going on 7 years but my first encounter with PMR took 3 and 1/2 years to taper off and the second time my PMR came back six years later, it took me 1 and 1/2 years to taper off. Each of us are different and that's why I like this discussion on tapering started by @dadcue.
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/
Do you keep a daily journal of your aches/pain level when you get up in the morning along with your dose of prednisone? This really helped me when I was tapering and recommended by my Mayo rheumatologist to help me know what my acceptable level of pain was when tapering.
@franklinlala With my first symptoms of PMR my doctor prescribed me 32mg prednisone for 3 days, (after a few hour’s symptoms gone) then tapering down every fourth day to 16, 8, 4 so in total 12 days of prednisone. My symptoms returned on day 13 in the evening and were back on day 14. But my doctor told me it is a way to be sure you have PMR because when your pain would remain when taking prednisone they have to search for another diagnose.
I was referred to a rheumatologist after that and she wouldn’t want to give me prednisone because CPR was not elevated at that time. I had to wait for 4 weeks in tremendous pain (!!!) to have a PET scan. Painkillers did not help at all, I avoid taking medication but I have never been more happy when I could take prednisone again.
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@franklinlala Your friend is right - your taper plan seems very unrealistic for someone with PMR. If you google how long the average person takes prednisone to treat PMR, it says 1 to 3 years. PMR is like a fire in your body. Prednisone controls the fire, but it doesn't extinguish it. For most people PMR eventually burns out, but for some people it keeps going, and they have to keep taking medication to control it.
I'm surprised a rheumatologist suggested that plan. If I were you I would look for a different doctor.
It sounds like you need to be on a higher dose for a while to get your PMR under control. Then you can start tapering slowly until you find the lowest dose that controls your PMR. Then stay there to give your PMR time to burn out.
If you want to get off of prednisone faster, you can take Kevzara, a biologic drug approved for PMR, or methotrexate. That would allow you to possibly taper completely off of prednisone, depending on how effectively those medications control your PMR.