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Adjusting to life with temporal arteritis
Polymyalgia Rheumatica (PMR) | Last Active: Jan 13 9:52am | Replies (217)Comment receiving replies
Hello @gee18, I'm sorry to hear you having trouble with the treatment for PMR and GCA. You mentioned the prednisone relieved your symptoms but tapering sent your labs back up. You also said you were just diagnosed in April 2023 and put on high doses of prednisone. I'm wondering if you may have been trying to taper off of prednisone too quickly. I'm not a doctor but my Mayo rheumatologist always told me to listen to my body when it comes to tapering down to the next level of prednisone and let that determine when it's time to taper down. There is another discussion that you might find helpful on alternatives.
--- PMR: Are there treatment alternatives to Prednisone?: https://connect.mayoclinic.org/discussion/alternatives-to-prednisone/
I'm tagging @tsc and @nyxygirl who may also have some thoughts or suggestions on alternative treatments and tapering.
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Hi @gee18, I'm wondering if a temporal artery biopsy confirmed your GCA. If so, then I guess your diagnosis is correct. What was your initial dosage?
I was initially put on 40 mg per day of prednisone after a positive temporal artery biopsy. My rheumatologist had me taper down by 5 mg every two weeks, and I had a CRP test every month. Only once did I have to go back up to the prior dosage because the CRP was elevated. At the lower dosages of prednisone, 10 mg, I tapered down by 1 mg every two weeks. I was on prednisone about 17 months and have been off it for 14 months with no flareups. I have no experience with any other treatments.
If the prednisone is not working for you, I wonder if you could have something else going on. Maybe that's a question to ask your rheumatologist.
I wish you the best.