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First meeting with endocrinologist
Polymyalgia Rheumatica (PMR) | Last Active: Mar 26 2:26pm | Replies (15)Comment receiving replies
@dadcue hi. Is this a new finding on low dose prednisone? Is it ok to just quit if cortisol level is ok? I’ve been on Actemra for 7 months and have been on prednisone 1 then 2 mg alternating every other day.
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@randersonccc
I would suggest that you have a discussion with your doctor. It is generally not safe to abruptly quit prednisone, even at low doses (1–2 mg) and even if cortisol levels appear to be okay. There are many other factors to consider so communication with your doctors is imperative.
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It took me a long time to trust that Actemra was working for my case of PMR. My endocrinologist and I talked about many things in preparation for me to discontinue prednisone. What impressed me the most was how she would not make any predictions about what would happen when I stopped prednisone. She only said that 3 mg was a low dose and my cortisol level was "adequate." She kept asking me whether or not PMR was controlled and I wasn't so sure about that. What gave me some reassurance was my endocrinologist said I could take Prednisone again for "any reason if I felt the need."
There wasn't any absolute way that my endocrinologist could say that I didn't need Prednisone anymore. She conferred with my rheumatolgist before telling me that it "might be safe" to discontinue prednisone. It was mostly my decision about when and how I was going to stop prednisone. I discussed it with my doctors what I was going to do and they approved. I didn't go from 3 mg to zero abruptly but I didn't do a "prolonged taper" either. I remember thinking when I first stopped Prednisone that I was taking a "leap of faith."
My first attempt to stop prednisone didn't go so well. What happened got the attention of my rheumatologist, my ophthalmologist and my endocrinologist. Each one of these specialists was telling me something different. Within a week or two of stopping Prednisone the first time ... I needed 60 mg again. What happened to me wasn't catastrophic. It was something that was very familiar to me but it had been dormant for a long time. There was no way anyone could have predicted it to happen. I guess it partially explains why we are all different.
What happened was only a temporary setback. It only delayed the time for me to taper off Prednisone again by about 6 months. In the context of me taking prednisone for "decades" -- six more months wasn't that long.