Secondary adrenal insufficiency question

I'm truly sorry this is happening to you. You are very lucky you have a Rheumatologist that recognized your secondary AI. My symptoms were very similar to yours. It started at about 4 mg prednisone per day. Vertigo, nausea and periodic elevated heart rate. But my rheumatologist never supported a diagnosis of secondary AI. He would not refer me to an endocrinologist. My attempts to do that weren't met with support from the Healthcare system. I finally got in to one and he was, to be frank, an Ahole. He said I didn't have it without even attempting any type of testing. It was very disheartening to know I was going to have to go it alone. My rheumatologist's one saving grace is that he's allowed me to taper prednisone very slowly. I'm currently at 0.75 mg per day and plan to go to 0.5 mg on Monday and hopefully be off the drug by mid to late September, God willing. My PMR pain is around a 2 or 3 on a 10 scale, mostly in the am before my prednisone "fix" and late at night. I will have been taking prednisone for around 650 days.....

Stay the course, stay positive and try to move as much as possible, given your level of pain. Swimming, walking, pilates and stretching have kept me sane during this ordeal.

@lagpmr2024
Some of the traits you describe in your rheumatologist, I see in mine. When I tried talking about cortisol testing, he quite frankly said: " I don't do cortisol". And he does not believe in splitting pills. My pcp is also refraining from ordering a cortisol because " it's just not accurate ". I'm at 2mg taking a very slow path tapering by taking 1.5mg every third day for a few weeks and see how I feel.

I took prednisone for 12 years to treat PMR. It was "impossible" for me to taper off prednisone no matter how slowly I tapered. The "inevitable PMR flare" happened at 7 mg but I felt pain symptoms returning at 10 mg. My pain symptoms weren't exactly like my PMR symptoms when I was originally diagnosed with PMR but the pain was similar. My rheumatologist referred to my problem as "systemic inflammation" more often than saying I had PMR.

I was referred to an endocrinologist the first time when I was on 10 mg. The endocrinologist said there was nothing she could do for adrenal insufficiency if I still needed 10 mg of prednisone to treat PMR. The endocrinologist referred me back to my rheumatologist and asked if anything else could be used to treat PMR. The endocrinologist said I could come back to see her when I could maintain a Prednisone dose of 3 mg.

Nothing much changed for 2 years until I decided I wasn't going to try to taper off prednisone anymore. I was convinced by a person who had an adrenal crisis that my "prednisone tapering problem" was caused by secondary adrenal insufficiency. This happened in 2018 and I recall reading the following link that convinced me even more that secondary adrenal insufficiency was my problem.
https://www.endocrine-abstracts.org/ea/0056/ea0056p44
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My rheumatologist was skeptical and insisted that secondary adrenal insufficiency wasn't "rocket science" and I simply needed a slower taper. After my endocrinology consultation, my rheumatolgist was more open to finding an alternative to Prednisone. That was the same time the GIACTA research was done and Actemra (tocilizumab) was FDA approved to treat GCA
https://www.gene.com/media/press-releases/14667/2017-05-22/fda-approves-genentechs-actemra-tocilizu
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At one of my rheumatology visits in 2018 my rheumatologist presented his idea to treat me with Actemra if I was willing. He said Actemra represented my "best chance" of ever getting off prednisone. There was an arduous approval process because PMR was my diagnosis and not GCA. I committed to try Actemra if my rheumatologist could get it approved. Surprisingly ... Actemra was approved for me as long as I was treated "as if" GCA was my diagnosis. The language that was used in the request for approval was "refractory PMR and an inability to taper off prednisone."
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Actemra targeted and treated PMR but I had to keep telling myself that PMR was being treated. Any other symptoms that I experienced had to be adrenal insufficiency. The thing that was the most remarkable was how I tapered rather quickly down to 3 mg of prednisone. When I was on 3 mg, a morning cortisol level was checked after I held my Prednisone dose for 48 hours. A low morning cortisol level made my primary care doctor suspect secondary adrenal insufficiency from long term prednisone use. I was ordered to stay on 3 mg and I was referred back to the endocrinologist who evaluated my symptoms and confirmed secondary adrenal insufficiency from long term prednisone use. The endocrinologist actually "expected" that my adrenals would be suppressed after 12 years of being on prednisone. My ongoing symptoms were "consistent with" adrenal insufficiency. The only question that remained was whether or not my adrenals would recover,

It took approximately one year to taper off Prednisone but first my cortisol level had to be at an "adequate level." An adequate cortisol level meant that I could function but I was still at risk of an adrenal crisis if something stressful happened. The endocrinologist said I should resist taking prednisone again while she also said that I should restart prednisone for any reason if I felt the need,

It was an interesting year after I tapered off prednisone the first time. There was a need to restart prednisone a couple of times. However, as long as I take Actemra ... PMR has never relapsed. Actemra doesn't suppress my adrenal function like Prednisone did so my adrenal function fully recovered. I have been completely prednisone free for more than 5 years but I still do a monthly Actemra infusion.

I will keep this information in mind. My endocrinologist is very responsive and is in the best position of anyone on my care team to have the big picture. I'm holding off any further discussion with him until I get the cortisol level test results and then he and I will look at a course of action. I am very sure that my original diagnosis of PMR is correct, but I do think that a lot of my additional seemingly unrelated conditions have a common unidentified etiology and have suspected for a while that the answer belongs somewhere in the endocrine system.

@pmrsuzie And doctors wonder why patients self diagnose and treat. It's crazy for a rheumatologist dealing with PMR to refuse to deal with cortisol, although notice that mine didn't even mention it. My endo is a PA, and I am thinking that he may be better than a physician because he was not as conditioned to think in algorithms.

@potterywoman

You can have both PMR and also have secondary adrenal insufficiency from taking Prednisone for a long time. That was what I struggled with because there were overlapping symptoms.

The beauty of PMR being treated with something else rather than prednisone was that Actemra didn't suppress my adrenal function. PMR was treated while I recovered from secondary adrenal insufficiency.

My endocrinologist said that I had to stay on a low dose of Prednisone for my cortisol level to improve. I only had to be able to stay on 3 mg of prednisone without increasing my dose. After my cortisol level improved, I was able to discontinue Prednisone. Now PMR is treated with Actemra instead of Prednisone. I still have PMR according to my rheumatologist but Actemra doesn't suppress my adrenal function while it keeps PMR in remission instead of prednisone.

I had both PMR and secondary adrenal insufficiency from prednisone at the same time. The difficulty was that PMR flares were treated with more prednisone. The treatment for secondary adrenal insufficiency was less prednisone or ideally --- NO prednisone.

It was impossible to take more prednisone for PMR flares and less prednisone for secondary adrenal insufficiency at the same time! The main reason for tapering slowly off Prednisone is because of adrenal suppression.

Doctors understand the need to taper off Prednisone slowly but also "as soon as possible." Waiting for PMR to "burn itself out" doesn't always happen and is ridiculous because my case of PMR is refractory.

As we all know ... PMR can last for a long time. When PMR is treated with "long term" prednisone ... it is a setup for secondary adrenal insufficiency in my opinion.

@pmrsuzie Wow. I am getting tired of being totally sedentary. Does it get to the point where you can actually function? I was walking about 2 miles per day before this started. I am also a professional potter and need to make about 50 more pieces for a couple of fall shows I am committed to doing. I'm a handbuilder so 1) I work standing, and 2) my process is much slower than that of people who work on the wheel. I have been spending the past couple of weeks basically alternating between bed and chair. Tell me this won't be my life from now on.

I do feel very lucky to have my endocrinologist. He first rescued me 4 years ago when I was finally diagnosed with a parathyroid tumor that appears to have been quietly damaging my body for decades. I actually developed PMR not long after my surgery. When we discuss the results of my cortisol level tests, I am going to ask him if there is some sort of relationship between the two and if the key to everything lies in my remaining parathyroid gland.

@dadcue
During the period where you had pmr and secondary AI, were your inflammation markers elevated or normal?

A low cortisol level disrupts the body's entire balance or homeostasis. A low cortisol level can cause high levels of inflammation.

The more precise answer is that my inflammation markers weren't "regulated" when I was on prednisone with adrenal insuffciency. Neither was my BP, pulse, energy level, inflammatory response and immune response to infections, stress and things of that nature. Inflammation markers can increase and decrease for many reasons. When my cortisol level was low ... nothing was regulated. Cortisol regulates many things including inflammation. When your cortisol levels are low and stay low ... nothing is regulated well. Many things are out of balance along with other hormone levels that regulate other things.

When Actemra was started and I reduced my Prednisone dose, my inflammation markers were so low that I asked my rheumatologist if they were too low. I was told my low inflammatory markers were an indication that Actemra was working and was controlling the excess inflammation caused by the cytokine IL-6 which had a cascade effect on other cytokine levels. There is a vast network that is comprised of the nervous system-the endocrine system and chemical reactions that regulate our immune system. Science is just beginning to learn how it all works.

Actemra blocked the IL-6 receptor, which stopped the chemical signals that caused my high inflammation markers. Actemra shut down my overactive immune response to whatever was causing PMR without suppressing my cortisol level. So many things that were dysregulated when I was on Prednisone which gradually became regulated again after Prednisone was stopped. I have been able to stop blood pressure medications, cholesterol lowering medications, eye drops for intraocular pressures and practically every medication that was treating the prednisone side effects that I had.

My cortisol level rebounded after prednisone was stopped so things are regulated much better than they were. My endocrinolgist says I still have some other problems but at least I feel much better,

I will definitely raise the question with my endocrinologist. First step is to get the results of the bloodwork done. His stated goal was to do it to guide the rate of taper, which I find interesting since my rheumatologist basically is flying blind by not looking at my cortisol production or by monitoring the level in my inflammatory markers regularly. He told me that my April more or less annual appointment would be plenty of time to do that. Huh? How would he like to have his life upended and told to come back in 8 months? When I talk to my endo with cortisol test results in hand, I can discuss management with him instead.