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DiscussionIf you have tapering problems below 5 mg this might explain why.
Polymyalgia Rheumatica (PMR) | Last Active: 3 hours ago | Replies (62)Comment receiving replies
Replies to "Has your endocrinologist ever tried DHEA for your gradual prednisone withdrawal and adrenal supplementation?"
No ... DHEA wasn't recommended. I tried DHEA for a month on my own and stopped taking it. I didn't think DHEA was doing anything but I didn't take it very long.
My endocrinologist didn't recommend anything for secondary adrenal insufficiency because of my long term Prednisone use. Staying on 3 mg or less of Prednisone and waiting for my cortisol level to improve was the only thing I did. I was supposed to stay on 3 mg until my cortisol level improved.
I believe the only reason I could taper down to 3 mg and stay on 3 mg was because Actemra kept PMR inflammation in check. Actemra didn't suppress my adrenals and fortunately my cortisol level improved. My endocrinologist wasn't overly optimistic that my cortisol level would improve but when it did she said I could discontinue Prednisone.
What surprised me the most was that my endocrinologist said I could go from 3 mg to zero without tapering as long as my cortisol level was good. If I had symptoms of adrenal insufficiency then I could take Prednisone again. I had to go back on 60 mg of Prednisone the first time I stopped Prednisone. The 60 mg was because of a flare of uveitis that surprised me and everyone else and not because of adrenal insufficiency symptoms. My first attempt to stop Prednisone didn't go as planned.
After I got off Prednisone the second time, Actemra seems to keep PMR and uveitis in check. I don't have a rapid increase in pain but my pain levels gradually increase the longer I go without an Actemra infusion. My ESR and CRP also trend higher the longer I go without Actemra.
I don't know if I will ever be able to stop Actemra but I hope so.