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Adrenal Insufficiency and Tapering Prednisone
Polymyalgia Rheumatica (PMR) | Last Active: Jul 19 11:06pm | Replies (22)Comment receiving replies
Hey All- I wanted to give an update and also had a follow-up question in case there’s anyone following who might have experience this.
Yesterday, we finally had my dad’s Endocrinology appointment and despite re-reading and re-reading the excellent reply from @dadcue, goodness, adrenal insufficiency sounds so confusing to me!
The doctor explained (as others have said), it’s not possible to test for adrenal insufficiency while on prednisone; however she said she wouldn’t do it at all, until he could be on hydrocortisone for at least three months (as long as rheumatologist agreed). Maybe that’s her preference. Then, if he is confirmed to have adrenal insufficiency, he’d continue the recommended dose for it, I guess.
My question is, has anyone dealing with this switched from prednisone to hydrocortisone? And if so, did you have any trouble doing it?
We’re always very nervous about changing my dad’s medications because he so sensitive and if he has side effects, it usually causes behavioral issues (he has brain injury from a severe stroke) or is very difficult for my mom and I to manage as caregivers.
I’m also concerned because hydrocortisone has to be dosed twice a day, but my dad is tube fed, so it’s not exactly convenient to give medications. If you’re not familiar, the medications have to be crushed, dissolved in water, then out through the tube. I suspect he would experience side effects if the dose was late, for example if we couldn’t get home in time to smash the medication and have syringes, etc. available. Sigh.
Part of me is tempted to just keep him on a low dose of prednisone (current dose is at 6 mg) for quality of life purposes, since a low dose isn’t supposed to be *that* bad. He’s in his 70’s, so still of course with life let to live. But with the disabilities from his stroke and the huge challenges we face with changing medications (he’s statin-intolerant, antibiotics have caused severe diarrhea leading to dehydration because it’s hard to keep someone hydrated on tube feeding, etc.), I just wonder if it might be better to try to get him to a nice, round 5 mg prednisone if possible and keep him on it.
PS The endocrinologist also said she sees often that people start having trouble around 7.5 mg because that’s around the amount of hormone your body needs to function. That explains a lot!
Replies to "Hey All- I wanted to give an update and also had a follow-up question in case..."
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I'm sorry ... I missed your post back in April. I'm glad you were able to see an endocrinologist so soon. I would like to confirm what you were told.
True --- you can't "accurately" test for adrenal insufficiency while on prednisone. A morning cortisol level was tested when I was on 3 mg of prednisone. I didn't take Prednisone for 48 hours so my lab test was reasonably accurate. My cortisol level was low but that isn't enough information to diagnose adrenal insufficiency. It only suggested that I might have adrenal insufficiency. I was told to stay on 3 mg of Prednisone until my cortisol level improved. After 6 months on 3 mg of Prednisone, my cortisol level miraculously improved
True --- being on hydrocortisone would be preferable if adrenal insufficiency is confirmed. If adrenal insufficiency is only suspected then it would be okay to stay on prednisone until you get to 3 mg of prednisone. There are some complicated reasons for this but what the endocrinologist said is true. Yes, switching to hydrocortisone might be better but that might not be possible. My endocrinologist gave me the option of switching to hydrocortisone but said if I wanted to stay on Prednisone it was okay.
Under the circumstances ... I agree with your instincts and keeping your father on prednisone might be the best thing to do.
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"The endocrinologist also said she sees often that people start having trouble around 7.5 mg because that’s around the amount of hormone your body needs to function. That explains a lot!"
It certainly does explain a lot. It explained why I could never taper below 7.5 mg without experiencing more pain. I needed to increase my dose to 10 mg and try again. More and more I realized it was an adrenal problem and less and less a PMR problem. My low cortisol level and my symptoms made it very likely that adrenal insufficiency was part of my problem. I concluded it was a combination of BOTH adrenal insufficiency and PMR that made it nearly impossible for me to taper off prednisone.
It is absolutely amazing how many people have trouble when they reach 7 mg of Prednisone!!