Post Prednisone Adrenal Insufficiency

I was steroids for 6 months to treat PMR. I also had a fairly good experience. I also started at 20mg reduced to 5mg and was able to stop. I did gain weight during the 6 months on steroids but did not develop the moon face or swelling in my neck. I was 68 and very active. No other conditions. My cholesterol which which was about 230 total went to 305. My BP which was about 130/75 went to 150/90. My A1c was about 5.2 went to 6.0 and I developed a gastritis with an IBS. I have resolved all the above but I take medication to do it. Plus I have that fatigue. I found my hormones were low so I supplement TRT. I have found many of the OTC stuff has some side effects as well. Omega3 causes some of my IBS. I think my adrenals are working, but old age has a way of preparing you for the inevitable. I guess the best we can hope for is someone says you look good for your age.

Thanks @tuckerp for your comments. I fortunately do not have any other issues made or made worse by prednisone. I forgot to mention that I have recently been to the Dr to do some blood tests. All looks well so far on them but I am waiting for the cortisol test(s) results. At 64 years old, I am not willing to "let the old man in" as they say. I feel that I have some time yet. I want to be working and skiing hard, and I clearly know the inevitable. Nobody I know or have known has escaped that, yet.

In my case, the adrenal glands stopped making cortisol about 3-4 weeks after I started taking prednisone. The prednisone dosage had to be increased due to the reduced natural cortisol from my adrenal glands. The prednisone dosage went from 20 mg to 60 mg, due to severe inflammation that unfortunately had to be handled by an ER visit.

Months later, by tapering off prednisone quite slowly, my adrenal glands returned to producing cortisol normally without a problem. I was on prednisone for a total of about 6 months.

I'm 67 now, and my PMR/GCA started at age 63. It is in remission now as I take weekly shots of tocilizumab. I was already suffering from feelings of fatigue before my PMR/GCA began, I think due to a virus and then bacterial pneumonia I contracted when I was 60. I still suffer from some mild fatigue and have to manage my energy levels, although I am still very physically active outdoors, including whitewater kayaking, weight lifting, long walks over the local hilly region where I live.

Hope this helps.

Thanks @redboat . Always helpful to hear someone else's story. Did I understand you in that you may have had low adrenal (cortisol) prior to PMR? If so, what symptoms did you have from that?

Does anything seem to help with the last few stages of tapering off prednisone? With the help of Kevzara I am now on day 3 at 4mg of prednisone. I feel great fatigue in the morning and afternoon despite 9 hours of sleep.
Does anything help the adrenals kick back in at this stage? Exercise? Diet? Or just time and patience?

My opinion is that we are still affected by PMR symptoms (fatigue) even though we have tapered off steroids and even though our labs are “normal “. I am on Kevzara, my adrenals seem to be operating fully, and yet I am exhausted after completing tasks that I could normally have done prior to my diagnosis without any problem. I am waiting for the day that I can function prior to my diagnosis when intensity and endurance wasn’t an issue. Then I’ll know I am in true remission.

I actually was found to have low afternoon cortisol, and then had an ACTH stimulation test with results being adrenal suppression. My cortisol did rise after the ACTH but not as high as it should.
This was due to long term rashes that only responded to steroids.

I was told I should avoid steroids and to give it a year and my adrenals would kick back in (endocrinologist).

Unfortunately I have now been diagnosed with multiple autoimmune disorders (rashes were actually from that, just didn’t have a diagnosis), so avoiding steroids has been impossible.

I would recommend asking for the blood tests (serial cortisol to see how it is morning and afternoon, and ACTH stimulation test to see how your adrenals respond), because some levels of adrenal suppression do require treatment or at the least that you carry a rescue dose of steroids (injections and/or pills) for if you ever suffer a traumatic injury or illness.

@petermccarville I'm not aware the I had low cortisol before PMR, although it is possible. I did have long term problems with fatigue after a virus and bacterial pneumonia contracted with I was 60 years old. PMR/GCA hit me at 63.

Ask your doctor about DHEA supplementation.
It does not aid adrenal recovery which is managed by very slow taper.
It nonetheless can alleviate symptoms and it can be low during the taper.

@caroljeand . Thanks for your interesting take on the fatigue issues that you have, post steroid taper. I am not sure that I agree that these are still PMR symptoms that I have. I never really had fatigue with PMR . I also think that since I do not have the classic bilateral hip and shoulder pain, fatigue only after I complete a task of heavy work our something physical, and labs that are perfectly fine (no inflammation markers), and I do not have daily pain when just hanging out ...I can safely say that I do not have PMR anymore. My issue is overdoing and recovery. If I do not tax myself physically with a 8 hour day of digging holes for tree planting for example, then I do not have pain nor a hard time recovering from it. But when I do a day or two or three in a row like that (exercise, labor, etc) then I seem to get into a recovery deficit. My body aches and I am dead tired. But, I do recover eventually to a pain free state in a couple of days. I like to think I am in remission or "cured" but just suffering from the side effects of prednisone. Maybe this is just semantics?!