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DiscussionTesting for Cortisol levels during taper of prednisone
Polymyalgia Rheumatica (PMR) | Last Active: Jun 4 5:56pm | Replies (17)Comment receiving replies
Replies to "@dadcue That is very helpful. I am just hoping for any of cortisol activity in the..."
That is another story. I took the plunge. I stopped Prednisone but did a "countdown taper." --- 3 mg - 2mg - 1mg --zero over a week.
I didn't feel bad. PMR wasn't a problem. I didn't have an adrenal crisis. I was okay for about two weeks when I had a flare of uveitis. My ophthalmologist restarted 60 mg of Prednisone.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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Actemra controlled PMR and allowed me to get off Prednisone. Unfortunately, my opthalmologist said Actemra wouldn't work for uveitis and switched me to Humira. Uveitis went into remission quickly but when I got down to 15 mg of Prednisone again I started feeling pain. My rheumatologist was sure it was PMR pain but wanted me to stay on Humira to give it a chance to work. He said I should stay on Humira for 3 months to see if Humira would work.
After 3 months I still needed 15 mg of Prednisone for the pain. There was some behind the scenes discussions between my rheumatologist, ophthalmologist and endocrinologist but no consensus about what to do. Eventually my rheumatolgist said it was impossible to optimally treat everything and I was given some options.
1) I could stay on Humira to prevent flares of uveitis but I probably would need Prednisone for PMR. --- I wanted to be off prednisone
2) I could stop Humira and stay on Prednisone for PMR and prevent uveitis flares. ---- My endocrinologist didn't like that option because of adrenal suppression.
3) I could restart Actemra with the chance of getting off prednisone again because it was working for PMR. --- My ophthalmologist didn't like this option. My opthalmologist said it would be just a matter of time before I had another flare of uveitis. -
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I chose option 3 and tapered off Prednisone again.
After Actemra was restarted with more frequent injections, I tapered off Prednisone a second time. I went from 15 mg to zero in about a month after Actemra was restated ---so much for slow tapers.
My endocrinologist retested my a.'m. cortisol and said it was still adequate when I reached 3 mg. Although I was on 60 mg for a few days and got stuck on 15 mg again -- overall I wasn't on Prednisone very long. I successfully tapered off Prednisone again.
Now I do an Actemra infusion every month. I haven't had any problems doing Actemra infusions every month. I haven't needed Prednisone for more than 4 years.
All my doctors are happy that I don't need prednisone anymore. Actemra doesn't suppress my adrenal function. Actema can come with side effects too but my side effects on Actemra are mild compared to Prednisone side effects.