Adrenal Insufficiency and Tapering Prednisone

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/#:~:text=The%20goal%20of%20glucocorticoid%20replacement,daily%2C%20taken%20in%20divided%20doses.
"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."

Have you found anything in your research that looks at low dose Prednisone use and timeframes for developing adrenal insufficiency?

It is more about the "duration of treatment" with prednisone rather than the dose. If a low dose is 5 mg or less for a short period of time, maybe the risk is lower. However, 5 mg for a longer period of time, the risk of adrenal insufficiency may increase.

The following abstract addresses the risk of long term low dose glucocorticoid treatment.
https://www.endocrine-abstracts.org/ea/0037/ea0037ep46
I like this abstract because it mentions the "mismatch" between glucocorticoid requirements and production/intake. I'm thinking the production is the cortisol that the adrenals produce and the intake is the prednisone taken orally. The total daily requirement is never a fixed amount and depends on the day. I usually took a fixed amount of Prednisone on any given day but my requirement might increase. If my requirement increased and my adrenals weren't producing cortisol, I think that would create a mismatch. Perhaps this explains why many people experience flares during stressful situations at lower doses of prednisone.

I was able to taper down to 3 mg of prednisone because Actemra made it less likely I would have a PMR flare. It took me a while to convince myself that a PMR flare wasn't going to happen. At this stage, my rheumatologist stepped aside and referred me to an endocrinologist when my cortisol level was low. I wasn't having any PMR pain but I can't say I felt well because of the overwhelming fatigue.

I was instructed by my endocrinologist to stay on 3 mg of prednisone for an extended period of time. The 3 mg dose was a very low dose for me. My endocrinologist was surprised that I had a measurable cortisol level given I was on high doses of prednisone for a long time. I didn't feel well on the 3 mg dose but my endocrinologist "encouraged me" to stay on that dose. She also said I could increase my dose "if I felt the need."

My endocrinologist rechecked my cortisol level after 6 months and was surprised it was in the low normal range. She described my cortisol level as "adequate." She wasn't sure what would happen if I discontinued prednisone. When I decided to discontinue prednisone she provided me with a direct number to call. She said preferably I should call before taking prednisone again but didn't require me to call first. She even stressed once again that I should take Prednisone again if I felt the need.

My first attempt to discontinue prednisone didn't go so well but that's another story. What happened was completely unexpected but I needed 60 mg of prednisone again and an ophthalmologist got involved. Fortunately, it was only a temporary setback.

This is another article that may speak to low dose prednisone for a short duration.

"Conclusions
The heterogeneity of studies and variability in results make it difficult to answer the research questions with confidence based on the current literature. There is evidence of AI following low doses and short durations of glucocorticoids. Hence, clinicians should be vigilant for adrenal insufficiency at all degrees of glucocorticoid exposure."
https://www.sciencedirect.com/science/article/pii/S0049017216000913

Thats quite disturbing but thanks for the link.

Adrenal insufficiency can certainly be an issue for some people when dropping to between 4 - 6mg. But one thing that's rarely mentioned by doctors or patients is that PMR is "self-limiting", meaning that simply reducing prednisone gradually does not make it go away. It goes away or not when it is good and ready. Prednisone is not curative, it just keeps the PMR inflammation under control. Some of us might just reach the lowest dose that keeps the pain and inflammation under control (the lowest effective dose) and the PMR is still active.

How is anyone supposed to know when PMR "burns out" or "self limited itself? If PMR did that, it wasn't like an on/off switch. At least, I never knew if PMR self-limited itself or not.

I did something I called "peeking under the prednisone." I would lower my dose just to see what happened. I lowered my prednisone dose gradually to determine what my lowest effective dose was. Invariably something would happen. It was some kind of pain but it was never exactly the same as my original PMR symptoms.

I told my rheumatologist that I wasn't sure if I still had PMR or not. I felt miserable. Yes, there was some pain but not anything like the original shoulder pain when I couldn't lift my arms or get out of bed without help. The uncertainty about whether or not I still had PMR was at doses less than 10 mg.

After many years on prednisone, I suggested to my rheumatologist that she only prescribed prednisone to me because maybe she thought it was what I wanted. The suggestion was that I was stuck with taking 10 mg of prednisone every day and she was responsible for feeding it to me. My rheumatologist was very patient with me!

I wanted prednisone but probably not for PMR only. In my case, there were many reasons why I took prednisone. Pain was the overall reason but I don't think I took prednisone just for PMR pain, When I started to read more about adrenal insufficiency and how people become "dependent" on prednisone, I became more and more convinced I had adrenal sufficiency, However, I must have still had PMR because my rheumatologist said I still had PMR along with "other things." She called the other things widespread systemic inflammation.

My symptoms were probably caused by both PMR and adrenal insufficiency. Actemra was prescribed for the part that was PMR. That allowed me to taper quickly down to 3 mg of prednisone. At that dose, my adrenals needed to contribute some cortisol or I was going to be miserable for the rest of my life. If my adrenals weren't going to produce enough cortisol, I was going to have widespread systemic inflammation. I came to this conclusion after I learned how cortisol "regulates" inflammation along with many other things.
https://my.clevelandclinic.org/health/articles/22187-cortisol
"Suppressing inflammation: In short spurts, cortisol can boost your immunity by limiting inflammation. However, if you have consistently high levels of cortisol, your body can get used to having too much cortisol in your blood, which can lead to inflammation and a weakened immune system."

In my opinion, you can also substitute prednisone/prednisolone for the word cortisol in the above statement.

"How is anyone supposed to know when PMR "burns out" or "self limited itself?"
Don't ask me! I'm a fellow PMR traveller who had my first flare at 6/6.5mg two months ago. 6mg was a bit high for adrenal insufficiency so I held to the 6mg, hoping the aches would resolve with time. Slight post-reduction aches normally resolve for me within 2wks, but over the next 4-6wks the small aches gradually increased to 5-6/10 pain, so I gave up and let the doctor know I'd had a flare. Blood tests confirmed inflammation was high again.

The flare was really crushing and I felt I'd failed. Everything was done "right", the slow taper of 1mg every 6wks (half a mg every 3wks), high nutrient diet, no processed foods, low oxalate, low lectin & gluten free, high calcium & protein and a few essential supplements. And regular light activity outdoors. What could go wrong... Yet it did.

At least now I know my lowest effective dose is 7mg, and I should have gone back up to that when the aches didn't resolve in 2wks, rather than hanging on so the inflammation grew and set in. A doctor-ordered rise to 10mg for a week didn't help, so I was put back on 15mg for 5 days then down to 12.5mg. Eleven months of hard reduction work for nothing - back to the start dose again. I'm pretty browned off with everything right now, but at least the pain is gone again.

I don't think you failed and don't let the flare crush you! I understand your feeling ... believe me! In my opinion the treatment with prednisone failed ... not you! It always amazed me how methotrexate and leflunomide "failed" after one flare but prednisone was given literally hundreds of chances.

The treatment failure became very apparent to me after Actemra was started. I don't know if Actemra will work for everyone or not. I understand that Actemra isn't available to everyone. Actemra is not appropriate treatment for everyone according to my rheumatologist but acknowledges the benefits I have. All I know, after Actemra was started, all the tapering strategies I had tried over the years were meaningless.

I fully anticipated another tapering failure when I started Actemra. After tapering by 1 mg per month, I was surprised that I got to 7 mg without a flare. I threw caution to the wind because I wanted to get the "inevitable flare" over with. I tapered by 1 mg per week and suddenly I was on 3 mg. I started believing that there was an "off switch" as far a PMR symptoms went.

I told my rheumatologist how I felt. That was when a cortisol level was checked. My rheumatologist demanded that I stop tapering. I was ordered to stay on 3 mg until an endocrinologist was consulted. That was the only time my rheumatologist didn't want me to attempt to taper off prednisone. An endocrinologist verified a low cortisol level and instructed me to stay on 3 mg if I could.

Staying on 3 mg was tough but the pain didn't dictate a need to increase my dose. Actemra seemed to be working for the pain. My inflammation markers were miraculously so low, I asked my rheumatologist if they were "too low!" Apparently my inflammation markers were no longer reliable on Actemra so we relied on my symptoms.

When my endocrinologist informed me my cortisol level was adequate, she said it might be safe to discontinue prednisone. I balked at the idea of going from 3 mg to zero all at once. However, it didn't take me too long to go to zero.

Of course, I subsequently needed to go back to 60 mg of Prednisone but that is another saga in my prednisone journey.

I don't really understand the feeling of being "browned off with everything!"