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← Return to PMR relapse symptoms
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@abbeyc and how many doctors just put them back on prednisone again, I wonder?
I was totally thinking that after I’m down to my last dose and off them and the pain starts again, I’d have to go on them again. This article gave me a new perspective and that we should work through any pain that pops up by other methods. Is this what you took from it?
Replies to "@abbeyc and how many doctors just put them back on prednisone again, I wonder? I was..."
@vjm0223 that’s what I’m doing. I have no intention of ever going back on prednisone unless I have a complete relapse which leaves me unable to move or walk. And next time I know not to go back up in dose with every little new ache when tapering off.
In the meantime I am working through it with hopes it will eventually subside all together. It’s manageable right now.
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@vjm0223
In my case ... I had PMR compounded by adrenal insufficiency. It was absolutely impossible for me to get below 7 mg of prednisone. Keep in mind that I took Prednisone for 12 years for PMR.
When I started Actemra (tocilizumab) it became clear to my rheumatologist what was happening. Actemra did its job and controlled PMR while I tapered my prednisone dose down to 3 mg. Actemra didn't suppress my adrenal function while it controlled PMR pain.
Nevertheless ... I had to remain on 3 mg of Prednisone for months until my adrenals regained some of their function. I was very "uncomfortable" staying on 3 mg of Prednisone in the sense that I didn't feel well however, my PMR pain was controlled. I had other aches and pains but not PMR pain.
I had permission to increase my Prednisone dose if I felt the need but I needed to resist the temptation if I expected my adrenal function to return. Fortunately, I had a good endocrinologist who talked me through what I should expect.
The incredible thing to me was what my endocrinologist told me after my cortisol level improved while I was still on 3 mg of Prednisone. She said 3 mg was such a low dose that there was no need for me to taper ... I could simply go to zero and discontinue Prednisone. I did a fast taper from 3 mg to zero but I was told that I didn't need to as long as my cortisol level was "adequate." After stopping Prednisone, I was also given permission to restart Prednisone again if I felt the need.
Two things needed to happen:
First --- PMR needed to be in remission so that I didn't need Prednisone anymore. Actemra has kept my PMR symptoms under control for more than 5 years which is how long I have been off Prednisone. Actemra doesn't suppress my adrenal function like Prednisone did.
Second --- My cortisol level needed to return to normal levels before I could taper off Prednisone. It took the better part of a year on a very low dose of Prednisone for my adrenal function to improve. Even when I discontinued Prednisone, my endocrinologist still didn't know if my cortisol level would be adequate every day going forward. She said I should expect good days and bad days but my adrenal function should continue to improve if I could refrain from taking Prednisone.