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← Return to PCP advising fast taper
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"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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Hi again Dad,
Missed your messages. I apologize for not staying more interested…just quite disappointed in this latest journey and treatment.
Wonder why these rheumatologists here can’t get on the same page. No one has talked to me about my adrenals or cortisol numbers. The latest Rheum. has me down to 4 mg/month from 20 mg which was advised in recent flares by both family PA and Rheum decreasing by 1mg per month. There was a lot of up and down dosage of prednisone. Of course I’m ecstatic to be so low but what next? PTH and calcium finally normal after concern about hyperparathyroidism. Reclast hangover he said. That was the endocrinologist. I asked the new rheumatologist how much pain do you want me to have before I stop the taper? He said to call, I did and sed rate is back up to 29, CRP was normal. Sed rate in 8-9 years has never been above 36 so he says it’s not PMR. Had Toradol injection yesterday, only made me nauseous and headache with some pain relief in shoulders and neck. The jaw locking and vision is stable, but tooth pain and headaches come and go. The nodules are still present in wrists, now 13mm in right lower lung. Incidental finding in CT-Abd for kidney stones. Wonder if side effect from Methotrexate which no doctor will speak about with me. Interesting you have stones too!
Allergic to Kevzara so not wanting anymore biologics. Mine were all self inject except for Reclast. One of them did seem to help the hand and large muscle pain but would cause another issue.
Thank you for any ideas/comments or suggestions you might have. Anyone else too!
Karo