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Testing for Cortisol levels during taper of prednisone
Polymyalgia Rheumatica (PMR) | Last Active: Jun 4 5:56pm | Replies (17)Comment receiving replies
That is quite a long journey but thankfully something is working for you. I did realize two weeks ago when this back and forth started between my PCP, Rheumatologist and endo that no one knows how to safely treat PMR with adrenal function. There are all different factions involved. At least your rheumatologist gave you the options. I do like the idea of staying on 3mg for 6 months and testing cortisol again then. Thank you for all of your input.
Replies to "That is quite a long journey but thankfully something is working for you. I did realize..."
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Don't get too discouraged. I was on Prednisone for 12 years before learning about Prednisone induced adrenal insufficiency. There isn't much that can be done if you still need Prednisone to treat PMR. However, 12 years of Prednisone didn't cause my adrenals to permanently shut down. My endocrinologist wasn't too optimistic that I would ever get off Prednisone but I did. It just took me a long time.
I was lucky the doctors I saw always encouraged me to keep trying to taper off Prednisone. I didn't need any encouragement to take more Prednisone because I was a master at doing that.
I think I know what triggered the uveitis flare. I felt so giddy about being off Prednisone that I wanted to try swimming again. I did a few laps in the swimming pool and it felt great. I was thinking I would drown so the swim was spontaneous just to see if I could still swim. I didn't wear goggles and I think the chlorine triggered the flare of uveitis.
My energy improved the longer I stayed off Prednisone. It has been 18 years since I was first diagnosed with PMR. I still have age related aches and pains because I didn't get any younger. I was 52 when I was diagnosed with PMR and I'm now 70. It was a long journey for sure.