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← Return to Tapering off of Prednisone
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I don't really understand the dangers of not using prednisone or not enough prednisone vs just NOT using it? I've read that Giant Cell Arteritis has a risk of blindness if prednisone isn't started promptly, and I've read that there is a chance that other blood vessels, the aorta and its branches, can become inflamed. But what about PMR? Is there a risk of blood vessel damage with PMR if you don't use artificial means to reduce the inflamation? My Dr told me to stop my reductions, and to increase my dosage of prednisone slightly when labs showed my ESR (sedimentation rate) climbed back up to 42, after it had dropped to 22 after 4 weeks on prednisone . I wasn't struggling with pain from the reduced dosage so it was the lab test that was the deciding factor I guess? Does anyone else have labs taken to determine when to cut back?
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I have labs about every 3 months. I guess that is the best way for them to determine what the inflammation level is, and it's a useful tool. They do the ESL and the CRP and it's important info for the docs to review what's going on and I also have to have labs for the Actemra that I take. I'm not a fatalist, but I am (84) and still pretty active. I sew and craft, and do some small amount of gardening with my husband, so I don't worry too much about what is going to happen to me. I have a great life. I try to see the good around me, and let the rest go. Except when I overthink this stuff.
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@2heal - It can be scary to read about symptoms, treatments, and possibilities. These are questions you should really discuss with your doctor or better yet a rheumatologist who is familiar with PMR and Giant Cell Arteritis. Along with the blood tests my doctor and rheumatologist always asked if had any headaches, tenderness in the temples, changes in vision, jaw pain, or fever which are symptoms of GCA. More information here: https://www.vasculitisfoundation.org/education/forms/polymyalgia-rheumatica/
I only had the ESR and CRP labs done when I had my initial diagnosis of PMR the first time in 2007 and once a year until I was able to taper off of prednisone in 2010. Then my new primary care doctor ordered the ESR and CRP tests for my yearly exam. My PMR came back in 2016 and was active for a year and half. Here's some information on what the test results mean - Erythrocyte Sedimentation Rate (ESR): https://labtestsonline.org/tests/erythrocyte-sedimentation-rate-esr
Can you ask your doctor what does the elevated ESR mean if you don't have any pain or your pain is really low? and more importantly, why should I not be trying to taper off of prednisone?