Adrenal Insufficiency and Tapering Prednisone

Seriously, you've never felt totally 'over it' after everything you have been through ? You must have a remarkable outlook on life !

I wouldn't say I'm completely over it but I'm getting close. I sometimes think about everything when I post this stuff --- it seems therapeutic to write about it now.

PMR doesn't bother me so much anymore. Trigeminal neuralgia bothers me the most -- I try not to think about that.

I actually thought PMR was a blessing when it was diagnosed, I got all the help I needed after that. I was managing reactive arthritis, uveitis and trigeminal neuralgia myself with prednisone supplied by my ophthalmologist. My ophthalmologist prescribed whatever dose of prednisone I wanted for uveitis flares. My ophthalmologist didn't want me to run out of prednisone.

About 15 years ago, I threw away my entire supply of prednisone. That was a huge mistake because that led to PMR being diagnosed. I never had any problems tapering off prednisone when it treated uveitis. I only needed a couple of weeks of high dose Prednisone followed by a fast taper to quell uveitis flares. My ophthalmologist prescribed massive amounts of prednisone. I didn't need nearly as much prednisone that was prescribed so I had plenty to spare. My ophthalmologist of 20 years eventually tossed in the towel. He told the uveitis specialist that I was "skilled with prednisone tapers."

I wasn't so skilled with tapering off prednisone after PMR was diagnosed!

I don't feel comfortable taking emo's thread about possible adrenal insufficiency in their Dad too far off topic. They're after specific information and will get a lot of unrelated notifications. A chat for another thread maybe.

Sorry about going off topic, that was insensitive with everything you are trying to manage and control. AI seems to be difficult to diagnose while still on Prednisone and i havent seen many people here or on the forum in Australia who have experience with it apart fron 'dadcue'. The blood test is probably not going to be much help, just a general indication ! He will probably need serial urine collection at different times of the day and an Endocrinologist to interpret results to be more accurate. At the end of that he may have to continue on low dose Prednisone. Your Rheumatologist will no doubt guide you through all this...your Dad is lucky to have you helping him to navigate the complicated maze of health issues.

The problem with testing for adrenal insufficiency is because cortisol levels can't be tested reliably until a person is on a low dose of prednisone that can be held for 24 to 48 hours. Not many people with PMR/GCA can do this easily or safely. Many people on long term prednisone for PMR/GCA seem to have flares at or near the 5-7 mg level of prednisone. I was amazed how often this happened because it happened to me many times. I was told my serum cortisol level couldn't be reliably tested until I could maintain a prednisone dose of 3 mg. I was only able to maintain my 3 mg dose of prednisone after Actemra was tried.

"A downside of these assays is cross-reactivity with structurally similar molecules to the analyte, which could lead to false clinical interpretation. Due to structural similarity between methyl prednisolone and prednisolone and the analyte, falsely elevated cortisol levels have been reported with cortisol immunoassays."

I lost all hope that I would be able to taper off Prednisone until a person who had an adrenal crisis explained things to me. She encouraged me to preserve whatever adrenal function I had left. I wondered why I couldn't taper off prednisone quickly after PMR was diagnosed when I could do that easily for 20 years before PMR was diagnosed. The only difference was "short term use" versus "long term use." of prednisone.

"Glucocorticoid treatment is fundamental in polymyalgia rheumatica (PMR) and giant cell arteritis (GCA), but carries a risk of glucocorticoid-induced adrenal insufficiency. Adrenal insufficiency can cause reluctance to stop glucocorticoid treatment after disease remission as symptoms can resemble PMR/GCA flare."

What is the treatment for adrenal insufficiency??? More Prednisone but hydrocortisone is preferred.

Hi @dadcue and everyone really- Thanks so much for the detailed replies and resources. Sorry to be MIA; it’s just been a really rough few weeks.

So my backstory is my father had a severe stroke about two weeks after being diagnosed with PMR which may or may not have been related to GCA. Things get really hard, as he now has significantly impaired physical and cognitive function, it’s nearly impossible to find qualified and affordable caregivers, he’s on a feeding tube, may have vascular dementia as a result of the stroke, and on and on and on.

And on top of all this we’ve been dealing with the PMR and prednisone taper. Luckily (if I can even put it that way), he’s not seronegative, so we can use labs to gauge his response but otherwise it’s very difficult to identify a flare and separate symptoms of PMR from the stroke, and from prednisone withdrawal. His doctors, except for his rheumatologist all seem clueless about PMR (his PCP completely missed the diagnosis) and oddly not very knowledgeable about prednisone side effects. They mostly chalk his symptoms up to the stroke, but it’s odd to me he’s been slowly losing what strength and energy he gained with PT/rehab ever since we got to 6 mg.

And I kind of thought that was the “worst” of it, only to find that PMR seems to be the gift that keeps on giving! It’s maddening.

Since January, he’s had more and more trouble tapering, hovering somewhere between 5-6.5 mg prednisone and experiencing more weakness, fatigue, have 1-2 day fevers, feeling unwell. Finally, his rheumatologist ordered a cortisol test, but it seems those aren’t always so reliable.

She said it’s “a little low” (how low is “a little”?? She’s very terse in her messages), which “may be due to adrenal insufficiency,” and that’s literally all her message to me said.

Thanks to this group, I knew to ask more questions. I responded and told her about our concerns and reiterated his symptoms, and her response was: “I submitted a referral to Endocrinology.”

So I guess we’ll do that for now. The soonest appointment is June, which isn’t as bad as I thought it would be.

It’s just really disheartening because with his physical and cognitive disabilities as they are and the information and resources that have been shared here… If he does have adrenal insufficiency, it would be extremely difficult to manage the testing, hold the prednisone, or even put him through the side effects of lowering the dose further. I don’t want to get too far ahead of myself, but I talked to my mom about it and we don’t know if the risks or impact on his quality of life would be worth forcing the taper if he is found or assumed to have adrenal insufficiency.

I say the symptoms of the prednisone withdrawal, PMR, or adrenal insufficiency for him are dangerous because he experiences severe weakness and fatigue. The more fatigued he is, the more difficult it is for him to manage his dysphagia. The weakness around his throat and neck makes it much harder for him to swallow, which puts him at risk of aspiration pneumonia, which he’s already had twice now, and for him can be deadly. Not to mention, when he can barely stand because he’s hemiplegic (severe weakness or paralysis on his left side) it takes a serious physical toll on all of us to manage his transfers to/from anywhere.

Sigh. I just feel really disheartened. It feels like a catch-22. Take the prednisone to manage the PMR, but the prednisone can cause all this.

I know; I’m ranting/venting now. And this is a super-long post.

But all of the information is helpful. I’m very grateful to all of you.

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!

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!!