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I’m Not Responding to Prednisone and I Need Advice
I was diagnosed with PMR last March. My doctor prescribed 15 mg of Prednisone and then reduced that to 12.5. There wasn’t much improvement and recently he increased the dosage to 20 mg. He also referred me to a rheumatologist with whom I have an appointment in four months. Things move slowly here.
I’m very tired all the time and I spend most of my days sitting at my computer or sleeping. The pain and fatigue make it impossible to accomplish much. I would appreciate any suggestions.
Thanks,
Cliff
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@hosers2
I'm no longer taking atorvastatin. I didn't need atorvastatin before PMR was diagnosed. I suspect Prednisone increased my cholesterol level because atorvastatin was started within a year of starting Prednisone. I took atorvastatin for more than 10 years . I don't think atorvastatin "contributed" much of anything to my muscle and joint pain during the 12 years I took prednisone for PMR. Whether atorvastatin caused some of my muscle pain or not would be hard to know at this stage.
An interesting thing happened after Actemra was started. Within a year after I tapered off Prednisone, my cholesterol level was below normal. One doctor said a cholesterol level can never be too low but my rheumatologist disagreed.
I was having residual pain while on Actemra but nothing close to the threshold of PMR pain. My rheumatologist checked my CK level and it was elevated. My rheumatologist thought storvastatin was contributing to some of my residual pain. An elevated creatine kinase (CK) level with concurrent muscle symptoms is a primary indicator of statin-induced myopathy. While low cholesterol is the goal of statin therapy, it doesn't cause muscle damage. Instead, statins are known to cause muscle toxicity.
My rheumatologist stopped atorvastatin but then my cholesterol level rose and was above normal again. My CK level normalized but I still had residual pain.
Fortunately, I was seeing an endocrinologist for Prednisone induced metabolic syndrome. The endocrinologist said I was "sensitive to statins" but I still needed something to control my cholesterol level. My endocrinologist started Zetia (ezetimibe) which lowers cholesterol levels by a different mechanism compared to how statins work.
I still see an endocrinologist for Prednisone induced metabolic syndrome. My endocrinologist said it will take a long time to reverse this Prednisone side effect since I took Prednisone for more than 12 years.
https://my.clevelandclinic.org/health/diseases/10783-metabolic-syndrome
and
https://pmc.ncbi.nlm.nih.gov/articles/PMC9772659/
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I'm making progress reversing metabolic syndrome. It took me a few years but since I stopped Prednisone, not only have I stopped atorvastatin, I have also stopped 3 blood pressure medications because my blood pressure normalized. Warfarin was stopped because my risk of another cardiovascular event is much lower since Prednisone was discontinued.
My cholesterol level is normal on Zetia.
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2 Reactions@tsc Normally doctors should screen for other issues before providing a diagnosis of PMR. It's quite common for a poor response to steroids to occur because the starting dose of prednisone is too low to quickly reduce the pool of inflammation that has built up in the body., and eliminate the new inflammation produce daily. And some people need higher doses than others. In my own case I was diagnosed with PMR and suspected GCA and needed 100 mg of pred for several days to stop the CRP escalating. And, yes, I was certainly on your 12/10 scale.
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1 ReactionThere are other diseases that have symptoms similar to PMR. If you are not responding to Prednisone, then that could be a sign that your doctor needs to widen his search.