Damage to adrenals? Addison's Disease?

Posted by LinaXYL @linaxyl, 6 days ago

I've been treating PMR for 3+ years. I also have an immunological deficiency that makes me very prone to infections, I've been on Methylprednisolone for PMR and IVIG for the deficiency. Four months ago I started tapering the steroid and began Actemra monthly infusions. I was down to 0mg of steroid a few weeks ago. I've been feeling very weak and exhausted for months - to the point that I will just fall asleep somewhere and wake up not even knowing I had been sleeping, except for the passage of time.
On top of all that I had a bad fall on our flagstone patio and landed on my lower back and head. I did get checked out at the hospital, nothing broken, just badly bruised. (Isn't that the story of life?) So I was really hurting from that on top of the PMR symptoms. I was taking Tylenol but it wasn't helping. I could hardly move so decided to try some Methylprednisolone to see if it was PMR pain or pain from falling. Pain was better within hours.
Someone suggested my cortisol could be low because I was so weak and exhausted, and indeed it is. Down from 14 to 3.4. So rheumatologist is sending me to hematologist and endocrinologist. Said he couldn't tell if it was primary or secondary adrenal insufficiency. Sed rate and CRP are good. I of course jumped on Google and found Addison's Disease. I have all the symptoms except for weight loss, I'm actually gaining. I could eat 1 grain of rice and gain weight. I guess low Cortisol can do that.
Has anyone had a similar experience? Any experience with Addison's? I have asked him to order a ACTH Stimulation Test, but of course doctor's don't do much work on Fridays so I'm waiting until next week.
If anyone has any insights I would appreciate your sharing.

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Mike | @dadcue | 5 days ago

Addison's disease is primary adrenal insufficiency. With Addison's disease, the adrenal glands make too little of the hormone cortisol. The problem is with the adrenal glands and there is no secondary reason for a low cortisol level. Addison's disease is very rare.

What isn't rare and actually quite common is Prednisone induced adrenal insufficiency. I have some experience with this prednisone side effect. This condition should not be confused with Addison's disease.

The newer terminology for this side effect from Prednisone is called Glucocorticoid-induced adrenal insufficiency (GIAI).

"Glucocorticoid-induced adrenal insufficiency (GIAI) is a well-known side effect of glucocorticoid therapy, and clinicians usually expect it in patients who receive systemic (oral, intravenous, and intramuscular) glucocorticoids in doses equivalent to more than 5 mg of prednisone for at least 3 weeks.1 However, glucocorticoids given through other routes can also suppress the adrenal glands."
https://www.ccjm.org/content/91/4/245#:~:text=Glucocorticoid%2Dinduced%20adrenal%20insufficiency%20(GIAI)%20is%20a%20well%2D,also%20suppress%20the%20adrenal%20glands.
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As for gaining weight ... that is also a well known side effect from Prednisone. There is a link between systemic corticosteroid use and what is called metabolic syndrome. A hallmark of metabolic syndrome is insulin resistance.
https://www.nhlbi.nih.gov/health/metabolic-syndrome
Insulin resistance is a precursor to type II diabetes, Has your insulin level been checked?

None of these problems go away as soon as Prednisone is stopped. However, tapering off Prednisone is a good first step. With any luck ... Actemra will make it easier to taper off Prednisone.