Secondary adrenal insufficiency question

Posted by potterywoman @potterywoman, 2 days ago

After being on prednisone for a couple years for PMR, I went off a couple of years ago with no problems. I had a flare in the late winter, and my rheumatologist put me on prednisone again. I was tapering when I saw him at my annual visit in April, and he slowed the taper a bit. I was off about a month beforewas starting to noticing slight fatigue and worsening of my osteoarthritis, especially in my hands. I gradually cut down my activity level. About 3 weeks ago, I had a day with extreme vertigo which at the time I (background in gerontology) and a friend (retired physician) both thought it was a UTI which does present with vertigo in older adults like myself. It got better but didn't resolve, so I went for testing. I drank water before the test and felt a lot better so I went to the bakeshop and bought bread before walking home about a block. All of a sudden, my legs felt like they were logs, my heart started pounding, and I almost passed out but made it home. By coincidence, I had made another appointment with my rheumatologist to examine my quickly swelling fingers. He tested my CRP and ESR, which were both much higher than they had been at my annual visit From an initial 2 mg, he now has me on 5 for what is most likely secondary adrenal insufficiency. My question is for anyone who has experienced this secondary problem -- what was your journey back like? How long did it take you to feel better after you started on cortisone again and did you gradually get to where you could be active and travel some? Thanks

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

potterywoman | @potterywoman | 1 day ago

In reply to @pmrsuzie "@dadcue During the period where you had pmr and secondary AI, were your inflammation markers elevated..." + (show)

@pmrsuzie I just got the "diagnosis" of secondary adrenal insufficiency last week. This whole thing is new to me, and my rheumatologist was basing his diagnosis on the fact that the 2 mg prednisone (which I raised to 3) wasn't being effective. So I don't really have a confirmation yet. PMR symptoms seem much better now that he has put me on 5 but the other symptoms continue to come around and whap me. One minute I feel fine, the next I feel like I need to sit down immediately.

Mike | @dadcue | 1 day ago

In reply to @potterywoman "@pmrsuzie I just got the "diagnosis" of secondary adrenal insufficiency last week. This whole thing is..." + (show)

@potterywoman

"PMR symptoms seem much better now that he has put me on 5 but the other symptoms continue to come around and whap me. One minute I feel fine, the next I feel like I need to sit down immediately."
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This is a good example of what happens when you have PMR combined with prednisone induced adrenal insufficiency. A low cortisol level will cause you to lose the ability to maintain any semblance of feeling like things are under control and well regulated. Life becomes unpredictable so that you never know what might happen next.

PMR is predictable if you take prednisone at the lowest effective dose to make the pain go away. When everything goes haywire at lower doses of prednisone it is time to wonder what your cortisol level is doing. Things went haywire for me at 7 mg but my endocrinologist said I had to be at 3 mg or less of prednisone for my adrenal function to improve. The doses between 3 mg and 7 mg were doses that I could never stay on for very long before I had to go back up to 10 mg.

This tricky zone between 3 mg and 7 mg often triggered a PMR flare or these severe other symptoms that were consistent with adrenal insufficiency before my natural adrenal function could recover. Unfortunately, an endocrinologist told me that my adrenal function wasn't going to recover if I needed more than 3 mg of prednisone.

Another problem is that a cortisol level is never very reliable for diagnosing adrenal insufficiency when a person needs more than 3 mg of Prednisone.

tweetypie13 | @tweetypie13 | 1 day ago

In reply to @potterywoman "@pmrsuzie Wow. I am getting tired of being totally sedentary. Does it get to the point..." + (show)

@potterywoman yes, you will function. The road is an uneven journey of seeming less frustration. I was put on Aqua PT, as in pool exercises against jets. Find a pool and walk…very rewarding…..can move arms too……
just be careful because I had trouble getting out with the first step . I was so excited I didn’t think abt that part. Ended up sitting on first step and lifting myself up one at a time. It was worth it.

bettebaldwin | @bettebaldwin | 1 hour ago

I’m curious to know what everyone is doing to improve their adrenal function specifically and HPA Axis overall? My understanding is that tapering will always be an ‘on/off’ process - with flares or 2ndry AI - if it’s success relies solely on adding in or reducing ‘artificial’ prednisone. Without addressing the underlying endocrine/inflammation problems. I’d be very interested to know what others are doing? Thanks.