Low cortisol post-ADT

[jmarsh]

I was on Lupron and Abiraterone + Pred for 2 years. I completed both in early June, so I am now 5+months post-ADT. My T is only now starting to return (was 32 last week). However, my cortisol levels are still very low. I suspect this is the cause of sore joints that I have experienced since ending the Prednisone.

MO is referring me to an endocrinologist/oncologist since he is concerned that Cortisol hasn't returned to normal yet.

Questions: Has anyone else experienced this after Abiraterone?

Did cortisol ever return to normal? How long did it take?

Anyone have to go on cortisol replacement long term? How is that going?

Thanks for any guidance here.

[RoseDoc]

You’ve been on Prednisone for so long that your natural production has been suppressed.

Most docs will taper you off of the steroid. It can take a while before the ACTH is produced and adrenals stimulated

[jmarsh in reply to RoseDoc]

Thanks for the response. They actually checked ACTH level and it was within normal limits, though at low end. How long a taper is recommended?

[InqPers in reply to jmarsh]

My Onc had me taper over 3-4 weeks, but I think longer would have been better as I definitely had some joint pain that persisted, but happy to say it did resolve after about 6 mos. If I had to do over (hopefully I won't), I would do a more gradual, perhaps 8 week taper.

[Derf4223 in reply to jmarsh]

Slow taper. Say you are taking prednisone 10 mg/day. For 2 weeks, do 7.5, then for another 2 weeks 5, then for another final 2 weeks 2.5. An endocrinologist should be supervising this and give you a cort stim test (blood test) first.

[jmarsh in reply to Derf4223]

What you recommend is approximately what I did, though it has been several months ago. Still find myself here with low cortisol.

[RoseDoc in reply to jmarsh]

Depends upon the length of time you were on Prednisone and the dose. Your oncologist should be able to calculate that for you.

[garyjp9]

I did a slow taper from Abi and 5 mg pred and still wound up with low cortisone. It is called "secondary adrenal insuffiency" and is very similar to Addison's Disease (primary adrenal insuffiency). It has now been 15 months, and my cortisol levels have remained very low. I take 15mg of hydrocortisone daily and may be on it for life. At least it is better than prednisone, Sometimes the cortisol levels come back with time, sometimes they don't. Endocrinologist is the right doc to see. Hope you do better than me!

[jmarsh in reply to garyjp9]

Thank you for sharing that with me. I’m hoping it won’t go that way but best to be mentally prepared. My appointment isn’t until late January