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Hi Jeff,
It’s been a while since I’ve been here. PMR diagnosis in about 2016. Still on prednisone but down to 5mg, then 4mg starting tomorrow. This has been multiple years of decreasing then up then back down. Rheumatologist insists it’s osteoporosis or fibromyalgia as I can’t have PMR with a sed rate..highest 36 and CRP always normal. This is the third doctor at this office. GCA was a concern, jaw locking and terrible headache about 6 months ago. My teeth still hurt, jaw is better and headaches come and go but nothing like the scary one. Surgeon won’t do a temporal biopsy since I’ve been on prednisone so long. My pain these days is so debilitating in the mornings, improves by evening. Kevzara caused chest pain and chest rash, Actemra took my sed rate to ZERO. Methotrexate caused nodules in wrists plus a 13 mm lung nodule which was not present 2024. That was an incidental finding as I passed more kidney stones in February 2025. Hand pain is retuning so one of the biologicals probably helped but now, won’t take them. Palindromic PMR (arthritis?) is what I was told can happen to hands and feet. This information was from my previous rheumatologist who stopped her practice, then opened her own office and mentioned my insurance didn’t pay her enough! Sorry I haven’t been more involved here but it’s been challenging the last year. I know my body and look forward to any comments/replies.
Karo actually Carol
Replies to "Hi Jeff, It’s been a while since I’ve been here. PMR diagnosis in about 2016. Still..."
"Actemra took my sed rate to ZERO."
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A zero Sed Rate is within the normal range and it isn't a bad thing. I do monthly Actemra infusions and my CRP and ESR are now negligible. Prior to Actemra my inflammation markers were always higher than normal range.
I was shocked to see my inflammations marker so low and I asked my rheumatologist if they were too low. Very low inflammation markers are now my new normal. My pain level is well within my tolerance too.
I was on Prednisone for 12 years for PMR. I never could get much lower 10 mg. When Actemra was started, I rapidly tapered to 3 mg. I had to stay on 3 mg as a "maintenance dose" because of adrenal insufficiency. My symptoms of adewnal insufficiency were generalized aches and pains but not as severe as PMR pain. I also had extreme fatigue and frequent dizzy spells until my cortisol level improved. I had to stay on 3 mg of Prednisone for 6 months until my cortisol level was adequate according to an endocrinologist. My symptoms of adrenal insufficiency improved the most after I discontinued Prednisone.
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Carol, I'm sorry you've had PMR for so long. I've read several times that ESR and SED rate can be normal and the person still have PMR symptoms. You would think most rheumatologists would know that.
People on this forum frequently mention that they split their prednisone dose into a morning dose and another dose later in the day, and that helps lessen the pain they have first thing in the morning. For example, if you're taking 4 mg per day, you could take 3 in the morning and 1 later in the day. If you do a search on "splitting dose" there are a lot of matches.