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Post Prednisone Adrenal Insufficiency
Polymyalgia Rheumatica (PMR) | Last Active: 3 days ago | Replies (23)Comment receiving replies
@stonewheel. The adrenals came back on during the taper but maybe not fully. I did a .5 mg taper every two to three weeks from 4 mg down to 0 mg. That smaller jump helped avoid any flares and made the adrenal re-adjust all the easier. I had some weird but unsustained aches and pains as the adrenals came back during that taper. And, I had some strange things happening that I described in my May letter to this chat room. The aches and pains were not PMR type pains that I knew very well. I was a bit tired for a month or so but then I was also working quite a lot physically. I tried to rest more and cut myself some slack and not just jump full throttle back into my previous high energy life.
I had my cortisol levels checked in June and by then I had normal levels. One of the cortisol tests was a test that lasted 14 hours (total of 5 samples of spit). It too showed that I was in the normal ranges of cortisol. My blood work was all normal and that included the inflammatory markers.
Many of the aches and pains were problems from overworking. I ws remodeling a garage and all that ,ind of work that I had not done in over a year was getting the best of me. I am finally getting a handle on much of the low back pain that I developed., as I said in part to hitting it too hard. But also I was just not "in shape" for that kind of work. At 64 y.o. I cannot just jump into that kind of thing anymore without paying the price. Another thing to note is that I had neglected my core exercising from the middle of March. I think that ws a part of it too. I am not back to glute, abdominal, and back exercises (core) that I had neglected. I feel much bater after about a month of every other day workouts. I am even back to more full body workouts of weight training. The smoke in Colorado , coupled with the heat, has been so bac=d this summer that my outdoor work has been curbed and my hiking has been to. A big bummer for most of us here. Just horrid conditions to live in.Cheers
Here it is August and I am back to my usually achy self and trying not to overdo! I did exercise, sports and labored physically while on prednisone but cut back my amount and intensity. Now I am almost back to my level of exercise that I was doing pre-PMR. I continue my acupuncture for support to this day.
Replies to "@Stonewheel. The adrenals came back on during the taper but maybe not fully. I did a..."
@petermccarville
Thank you for the quick reply. I am glad to hear that you are doing good. I especially appreciate your details. Reading about progress and success are inspirational.
I’m taking Kevzara though. I’ve tapered fast with it and slightly felt the adrenals “waking up” but not too bad, just noticeable and usually any ache is gone in a day or two. Currently, I’m taking 1 mg of Prednisone for ten days and then 0.5 for ten days. My Prednisone side-effects are lessening too.
Maybe I could stop the Prednisone now, but I’m playing it safe because I hate PMR pain.
Best wishes.
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@petermccarville
I was referred to an endocrinologist when a low cortisol level was "discovered." I had to be able to taper down to 3 mg of prednisone to get a cortisol level checked. The endocrinologist "expected a low cortisol level" and was more surprised that I had a cortisol level. Any cortisol level was a reason to be "encouraged."
I took prednisone for 12 years to treat PMR. It was "impossible" for me to taper my prednisone dose lower than 10 mg and that dose was my "comfortable prednisone dose." When I tapered to 7 mg the "inevitable relapse" happened.
Prior to starting Actemra (tocilizumab), I had to taper my prednisone dose as low as possible "just to see" what happened. I went from 10 mg to 7 mg and relapsed and went back to 10 mg. Interestingly, my pain when I relapsed wasn't exactly like PMR pain although I can't describe how it was different.
Actemra allowed me to reach 3 mg with relative ease and that was when my cortisol level was checked. When my cortisol level was low, I was advised that I should NOT taper any lower than 3 mg. I was surprised because nobody ever told me NOT to taper. Until this time, my instructions were that I should always to taper slowly. I was now being advised to stay on 3 mg for as long as it took for my cortisol level to improve and to refrain from increasing my dose unless it was absolutely necessary. The endocrinolgist told me to expect some discomfort. Fortunately, Actemra kept PMR in check so I didn't have a PMR relapse while I stayed on 3 mg of prednisone.
It took time but my cortisol level improved. The endocrinologist said "a single adequate cortisol level" didn't mean my overall adrenal function had improved. The only way for my overall adrenal fuction to improve was to discontinue prednisone and to see what happened. The endocrinologist wouldn't predict what would happen when I discontinued prednisone. The only reassurance she would provide was that I could restart prednisone "for any reason if I felt the need."
I would say it was at least a year after prednisone was stopped for my adrenal function to recover. It was a very eventful year after I discontinued prednisone. There was a need to restart 60 mg of prednisone again at one stage but it had nothing to do with an adreanal crisis or a PMR relapse. My cortiosl level was "rechecked" once during the year but my endocrinolgist said "it wouldn't be meaningful" to do routine cortisol checks. Routine cortisol tests are often not very helpful because the numbers change all day long and do not always show how your adrenal glands handle stress.
I have now been off prednisone for 5 years. I have to assume my cortisol level is normal. However, my endocrinologist is concerned that my hormone profile is abnormal. I have been diagnosed with a primary small bowel neuroendocrine tumor (SBNET) with metastasis. The SBNET has been slowly growing for a long time.
https://www.mayoclinic.org/diseases-conditions/neuroendocrine-tumors/symptoms-causes/syc-20354132