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Adrenal Insufficiency and Tapering Prednisone
Polymyalgia Rheumatica (PMR) | Last Active: Jun 20 9:43pm | Replies (17)Comment receiving replies
"How is anyone supposed to know when PMR "burns out" or "self limited itself?"
Don't ask me! I'm a fellow PMR traveller who had my first flare at 6/6.5mg two months ago. 6mg was a bit high for adrenal insufficiency so I held to the 6mg, hoping the aches would resolve with time. Slight post-reduction aches normally resolve for me within 2wks, but over the next 4-6wks the small aches gradually increased to 5-6/10 pain, so I gave up and let the doctor know I'd had a flare. Blood tests confirmed inflammation was high again.
The flare was really crushing and I felt I'd failed. Everything was done "right", the slow taper of 1mg every 6wks (half a mg every 3wks), high nutrient diet, no processed foods, low oxalate, low lectin & gluten free, high calcium & protein and a few essential supplements. And regular light activity outdoors. What could go wrong... Yet it did.
At least now I know my lowest effective dose is 7mg, and I should have gone back up to that when the aches didn't resolve in 2wks, rather than hanging on so the inflammation grew and set in. A doctor-ordered rise to 10mg for a week didn't help, so I was put back on 15mg for 5 days then down to 12.5mg. Eleven months of hard reduction work for nothing - back to the start dose again. I'm pretty browned off with everything right now, but at least the pain is gone again.
Replies to ""How is anyone supposed to know when PMR "burns out" or "self limited itself?" Don't ask..."
I don't really understand the feeling of being "browned off with everything!"
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I don't think you failed and don't let the flare crush you! I understand your feeling ... believe me! In my opinion the treatment with prednisone failed ... not you! It always amazed me how methotrexate and leflunomide "failed" after one flare but prednisone was given literally hundreds of chances.
The treatment failure became very apparent to me after Actemra was started. I don't know if Actemra will work for everyone or not. I understand that Actemra isn't available to everyone. Actemra is not appropriate treatment for everyone according to my rheumatologist but acknowledges the benefits I have. All I know, after Actemra was started, all the tapering strategies I had tried over the years were meaningless.
I fully anticipated another tapering failure when I started Actemra. After tapering by 1 mg per month, I was surprised that I got to 7 mg without a flare. I threw caution to the wind because I wanted to get the "inevitable flare" over with. I tapered by 1 mg per week and suddenly I was on 3 mg. I started believing that there was an "off switch" as far a PMR symptoms went.
I told my rheumatologist how I felt. That was when a cortisol level was checked. My rheumatologist demanded that I stop tapering. I was ordered to stay on 3 mg until an endocrinologist was consulted. That was the only time my rheumatologist didn't want me to attempt to taper off prednisone. An endocrinologist verified a low cortisol level and instructed me to stay on 3 mg if I could.
Staying on 3 mg was tough but the pain didn't dictate a need to increase my dose. Actemra seemed to be working for the pain. My inflammation markers were miraculously so low, I asked my rheumatologist if they were "too low!" Apparently my inflammation markers were no longer reliable on Actemra so we relied on my symptoms.
When my endocrinologist informed me my cortisol level was adequate, she said it might be safe to discontinue prednisone. I balked at the idea of going from 3 mg to zero all at once. However, it didn't take me too long to go to zero.
Of course, I subsequently needed to go back to 60 mg of Prednisone but that is another saga in my prednisone journey.