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PMR relapse symptoms

Polymyalgia Rheumatica (PMR) | Last Active: 19 hours ago | Replies (72)

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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.

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Replies to "@vjm0223 In my case ... I had PMR compounded by adrenal insufficiency. It was absolutely impossible..."

@dadcue
I have been on prednisone for almost 4 months. I am currently at 5 mg. My endocrinologist checked my adrenals for cortisol production and he said it was at a normal level. Have had 3 kevzara injections so far and am anxious to taper off prednisone sooner than later. My rheumatologist said to taper 1 mg per 15 days. Hopefully I can taper without too much discomfort since I haven’t been on prednisone that long.