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Adrenal Insufficiency and Tapering Prednisone

Posted by emo @emo, Apr 3, 2024

Hi friends- Does anyone recovering from PMR have experience getting diagnosed with and treating adrenal insufficiency?

I'm curious about how you and/or your doctor realized you should be evaluated for adrenal insufficiency, what symptoms did you have, and how did you confirm it?

My dad was diagnosed with PMR in May 2022 and has tapered down to 5.5 mg. Since January, he's been having trouble getting below 6 mg. We've had about 2 instances of low-grade fever and intermittent extreme fatigue, but he also has co-occurring conditions that could cause fatigue, and he's unable to communicate well, which makes it hard for my family to determine what's going on.

After the most recent episode with low-grade (99 degrees) fever that lasted two days, his rheumatologist sent us a message advising to get his labs done this week (ESR and CRP), and "I'll also add cortisol in case he has adrenal fatigue from being on prednisone for so long."

I'm going to reply to her message to ask if there's a certain time of day the blood should be drawn and if it's before or after the prednisone. All of this has been very hard on my family. My dad had a severe stroke 2 weeks after being diagnosed with PMR, he has physical as well as cognitive disabilities, and managing everything with PMR and a prednisone taper is just...sometimes it feels impossible. It's also no picnic to get him to doctor's appointments and blood tests. It's so frustrating to feel like it's one problem after another, and unfortunately we haven't always been able to trust his care team to be considerate of the whole picture. His rheumatologist is good, but I also want to make sure we're not missing anything.

I wondered if any of you have had experience with this?

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

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Colleen Young, Connect Director | @colleenyoung | Jul 18, 2024
In reply to @123suew "I need answers if someone can help me. I am recoving from pmr. I am on..." + (show)
Profile picture for 123suew @123suew

I need answers if someone can help me. I am recoving from pmr. I am on 6 mg. Of predison. The doctor wants me to go down. When I reduce it I faint. Now he thinks I have adrenal insufficiency. I am on 15 mg.of hydrocort And 6 mg. Predison and feel no different. How should I feel takin all this? Thanks

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@123suew, to help you connect with with others dealing with PMR and adrenal insufficiency, I moved your post to this existing discussion in the PMR support group:
- Adrenal Insufficiency and Tapering Prednisone
https://connect.mayoclinic.org/discussion/adrenal-insufficiency-and-tapering-prednisone/
See a list of all discussions related to adrenal insufficiency: https://connect.mayoclinic.org/search/discussions/

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123suew | @123suew | Jul 19, 2024

I had PMR for 2.5 years. Every time I got below 4.5 I would want o pass out. They had tried to get me off predison for 1.5 years after taking it the additional 2.5 years. Finally I am transitioning off predison to hydrocortisone and fluedrosone. I am starting to get my strength back. I am encouraged I am on the right road now. Dr. seem to be real reluctant to diagnose autoimmune insufficiency. You may need a new Dr. Good luck !!

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staylorrn2000 | @staylorrn2000 | Feb 8 6:44pm
In reply to @dadcue "Adrenal insufficiency is an often overlooked ramification of long term prednisone use. It may be a..." + (show)
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Adrenal insufficiency is an often overlooked ramification of long term prednisone use. It may be a reason why people are unable to taper off prednisone. My symptoms of adrenal insufficiency started when I reached 7 mg of prednisone and worsened as I tapered lower. My main symptom was overwhelming fatigue. Myalgia is a symptom of adrenal insufficiency and PMR but it was impossible to distinguish one from the other cause of the myalgia. I was forced to take more prednisone and that is the treatment for both PMR flares and symptoms of adrenal insufficiency.

I took prednisone for 12 years so an endocrinologist "expected" that I would have secondary adrenal insufficiency due to long term prednisone use. Unfortunately, I needed to taper down to 3 mg of prednisone to be able to accurately test for adrenal insufficiency. If you take prednisone for more than a few weeks the natural production of cortisol by your adrenal glands will decrease ... that is a given.
https://www.endocrine-abstracts.org/ea/0056/ea0056p44
My cortisol level was tested only when I could sustain a 3 mg dose of prednisone. Sure enough ... my cortisol level was low. My test was an 8 a.m. cortisol level after holding my prednisone dose for 48 hours. I was able to taper down to 3 mg when a biologic was started and my PMR symptoms were well controlled. The biologic I took didn't cause adrenal suppression so I was able to maintain a low prednisone dose for the first time in 12 years.

After it was verified that I had a low cortisol level, the treatment was to wait and see if my adrenals would produce enough cortisol again. I stayed on 3 mg of prednisone for 6 months as my cortisol level gradually improved. Eventually, my endocrinologist gave me the green light to discontinue prednisone when my cortisol level was deemed to be "adequate." Some people aren't so fortunate because their adrenals may take years to recover or their adrenals have permanently shut down.

If the adrenals don't respond to lower doses of prednisone and are unable to produce cortisol again, the treatment is a maintenance prednisone dose of about 5 mg for the rest of a person's life. Hydrocortisone is the preferred treatment for adrenal insufficiency and usually given as a twice daily maintenance dose.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6297573/.
"Chronic glucocorticoid therapy is the most common cause of adrenal insufficiency. The ­diagnosis of adrenal insufficiency is made by ­demonstrating low basal and/or stimulated serum cortisol and should be ­followed by appropriate investigations to establish the ­underlying aetiology. Maintenance glucocorticoid ­replacement is usually given as a twice or thrice daily hydrocortisone preparation."

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@dadcue, how did you taper from 7 mg down to 3 mg of prednisone?

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Mike | @dadcue | Feb 9 10:49am
In reply to @staylorrn2000 "@dadcue, how did you taper from 7 mg down to 3 mg of prednisone?" + (show)
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@dadcue, how did you taper from 7 mg down to 3 mg of prednisone?

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@staylorrn2000

It is a long story how I managed to taper off Prednisone. Considering I was on Prednisone for 12+ years to treat PMR, it was somewhat remarkable that I have now been off Prednisone for the last 5 years.

My "progress" at tapering Prednisone was "painfully slow" after PMR was diagnosed. My starting dose a long time ago was in the 20-30 mg range. I remained in that range for 5 years. For the next 5 years I stayed in the 10-20 mg range. I could never get much below 10 mg and every time I tried ... I would flare at about 7 mg.

I was somewhat content to stay on 10 mg for the rest of my life except I was "encouraged" to keep trying. All the encouragement finally paid off when a biologic called Actemra was offered to me. I called 7 mg a barrier that I couldn't overcome until the biologic was tried.

The short version of how I tapered off Prednisone with help from Actemra was as follows:

From 10 mg to 7 mg ... I tapered by 1 mg per month.

From 7 mg to 3 mg ... I tapered by 1 mg per week. During this time I was a pessimist about Actemra because of the negative feedback I received on another PMR forum. I only tapered by 1 mg per week to get the inevitable flare over with but a flare didn't happen.

I got nervous at 3 mg of Prednisone so I called my doctor. I was symptomatic in the sense of not feeling well. Overwhelming fatigue was my main problem because all my energy was gone. When I described my symptoms to my doctor a cortisol level was checked. I was told that I shouldn't attempt to taper any lower than 3 mg until I was seen by an endocrinologist for a low cortisol level.

I ended up staying on 3 mg of Prednisone for many months until my cortisol level improved. The endocrinologist said it "might be safe" to discontinue Prednisone. She said 3 mg was such a low dose that there was no need to taper. She seemed to think I should be able to go from 3 mg to zero all at once. I did a fast taper going from 3 mg to zero in a 7 days.

I only stay at zero for a couple of weeks. I had a flare but it wasn't a PMR flare. I needed 60 mg of Prednisone again when I had a massive flare of uveitis.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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I was more comfortable tapering off Prednisone for flares of uveitis. I wasn't on 60 mg of Prednisone for very long. I went for 60 mg to zero again in a couple of months. Now I have been off Prednisone for more than 5 years. I still do a monthly Actemra infusion. Being on Actemra made a mockery of doing an ultra slow prednisone taper. I wished that I had tried Actemra much sooner.

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