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Old 02-29-2024, 04:59 PM
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Originally Posted by BrianL99 View Post
ESR over 130. 1 year of almost debilitating pain. Had PCP do CRP (after our Google research). CRP was 100+..

20 mg of Prednisone every day, taper when the CRP# and pain reduces. Up down, up down, up down for 3 years. Tapered all the way down to 2mg/day (3 times) ... then had to go back up again.

At least I didn't get balloon face and tolerated the Prednisone well. My CRP still runs around 15 or so, but I guess that's just me. "Treat the patient, not the numbers" my Rheumatologist says they taught her in school.
Sorry you've had such a rough time of it---clearly you're in the worst 10% of PMR I've seen. The good news is that low dose and alternate day steroids are generally well tolerated, even for a long time. You will continue to have dosage adjustments, it's not an exact science. Hope you continue to get well.