After ADT

[Catmama5]

Adrenal insufficiency after stopping ADT & steroids.

My 72 year old husband had radical, robotic surgery 7 years ago.

PSAs were 0 until 2 years ago, then barely detectable.

Had the special PET scan, 3 spots lit up in lymph nodes, (in the area, none remote.)

Had 6.5 weeks radiation therapy.

Had 2 years of Lupron/Zytiga/steroid.

PSAs have been zero.

2 weeks ago ADT & steroids were stopped.

The steroids were not weaned.

Now he has adrenal insufficiency.

Symptoms were mainly extreme fatigue & weakness.

The GP put him on hydrocortisone tabs. He has constant nausea.

We don't know if it's from the adrenal insufficiency or the hydrocortisone.

Any thoughts?

[Tall_Allen]

Cortisone usually prevents nausea.

[Catmama5 in reply to Tall_Allen]

Steroids are wacky, they can prevent, treat & cause!

[dico]

Did the doctor retest his cortisol level to ensure that the hydrocortisone dosage is correct? My husband's doctor did a lot of testing, retesting and dosage adjustments before things improved. Just a thought.

[Catmama5 in reply to dico]

No retesting yet, but will be done in May. Thanks for your thoughts.

[gsun in reply to dico]

The cortisol level isn't as important for the dosage. It probably will not change from its low. The dosage should be what makes him feel better. I tried lowering mine from 10 to 5mg of prednisone and it didn't work. Went back to 10 and I feel better. My hematologist is good with it. I could even go to 15 but I don't need it.

Would it make a difference if you switched to pred?

[Catmama5 in reply to gsun]

Thanks for the response & the helpful information. He had an allergic reaction to prednisone and was on Decadron during the ADT therapy & is now on hydrocortisone.

[GAdrummer]

"The steroids were not weaned." -- that's the problem that can land the patient in the ER with toxic shock. It happened to my husband. He had to go thru a much slower weaning process and remains on hydrocortisone. It doesn't pay you to be in a hurry to get off steroids, it pays the hospital and endocrinologist. 😒 I know the long term use of steroids does a number on the skin. I often wish that I could keep him covered in bubble wrap to stop the skin tears and ugly bruises.

[Catmama5 in reply to GAdrummer]

Thanks for your response. I don't know why they didn't wean the steroid. I don't know why I didn't question it either, I know better. I sometimes have blind faith that doctors know best.

[garyjp9]

How much hydrocortisone is he taking? I did slowly wean off the prednisone I took with zytiga, and I still wound up with adrenal insufficiency. I take 15mg of hydrocortison daily. Nausea can be a side effect, but if it is constant I would definitely report that to the prescribing physician, because it could also mean he is not getting enough cortisol and needs a higher dose.

[Catmama5]

He was taking 10 mg twice a day. He is now taking 2.5 mg twice a day.

Nausea has been better the past two days. He still has extreme fatigue. He can't stand for long without getting weak & the nausea returns. Thanks for the advice.

I will try to reach out to the doctor again.