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Adrenal insufficiency after 3 years on Zytiga

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Posted 5/29/2022 10:59 AM (GMT -5)
Recently, I got off Zytiga when it became ineffective for me. The problem has been getting off the steroid. I've been trying to reduce the dose of .5mg of dexamethasone (I had switched from Prednisone a while back), but can't seem to make any progress, at least so far. Whenever I try cutting the dose I end up getting the classic symptoms of adrenal insufficiency, then have to recover. I've been trying to wean off this for a month now, and not making headway as far as I can see.

Wondering if anyone has had to deal with this and how long it took, what strategies were used, etc.

Post Edited (starfinder) : 5/29/2022 10:11:29 AM (GMT-6)

Posted 5/29/2022 12:02 PM (GMT -5)
Hello, Starfinder ~

Good to hear from you!

Soon - and very soon --- I will have been on ZYTIGA (Abiraterone Acetate) for seven years.

As with you, I take the required PREDNISONE tablets each day --- two 5 mg tablets.

I wonder if your oncologist can guide you through a "tapering off" regimen - and perhaps line you up with a compounding pharmacy that can create a series of VERY small-dose tablets for you --- with the goal of "tapering off" ...

I do know it's not an overnight process - as you can attest!

Hopefully, your post will summon the collective WISDOM OF THE CROWD here --- with a timely first-hand experience shared by our compadres here!

Keep us posted, STARFINDER!

My best to you,
CYCLONE - # Iowa State University
Posted 6/4/2022 12:00 PM (GMT -5)
Circling back around, STARFINDER ~~~

How are you faring now?

I hope you found a way to taper down on the steroids ... I know it can be a process.

Here's hoping this finds you doing well ~ thought I would check in with you!

CYCLONE ~ # Iowa State Cyclone
Posted 6/8/2022 9:39 AM (GMT -5)
Star finder,
Adrenal insufficiency after Zytiga is a very real issue. The sad truth is that after a long term use of Zytiga many men never regain normal adrenal function and are forced to take steroids in low-dose for a very long time or deal with the inflammation that occurs without the steroid use. The thing to remember in the situation is that the low-dose steroid that you are taking is replacing that which you no longer produce and you need to continue with the steroid use or deal with the consequences. For me that was dealing with a lot of painful stiff joints, bruises that took forever to heal, and it was not worth it and I went back on the prednisone. I have known a couple people that have totally weaned them self off of steroid use but I don’t know how they do it I honestly can’t take the discomfort that it causes
Posted 6/14/2022 7:55 PM (GMT -5)
Cyclone,

I'm doing OK, thanks for checking in. Still not able to reduce the steroids though.

Todd,

I'm thinking you are right about the possibility of permanent dependancy on steroids. I've been reading about it and have found that this is most likely to be secondary adrenal insufficiency. There is a hormone called ACTH that tells your adrenal gland to make corticosteroids. There is a test for that to check if you have any. If you don't, it can be injected and your Cortisol level checked to see if the adrenal gland is working. Currently I am taking Dexamethasone at .5mg per day although that seems barely adequate. From what I've read, Dexamethasone is the only steroid that doesn't affect the ACTH test.

I think the best course for me is have the tests done and see where I am at with adrenal function, then probably get a prescription for what I need. From what I could learn, hydrocortisone is the better, and shorter acting replacement steroid for this purpose.
Posted 7/29/2022 12:59 AM (GMT -5)
Update on my situation:

Had blood tests done before my doctor appointment today. My AM cortisol came in at 2.8 mcg/dL, significantly out of range on the low side. I've been trying unsuccessfully to wean myself off the steroids for about 3 months now.

My doctor told me today it is unlikely my adrenals will recover and agreed with me that it's not worth it to continue to try getting off them. Meanwhile my PSA has gone up so we are planning to start Cabazitxel in the next month. My doctor is swtching me over from Dexamethasone to Prednisone since I'll need to be on that anyway for the duration of the chemotherapy.
Posted 7/29/2022 9:40 AM (GMT -5)
Hello, Starfinder ~

Sounds like the daily dose of PREDNISONE is the way to go.

I take the 2 tiny 5 mg PREDNISONE pills each day, as part of my daily regimen, in accompaniment with ZYTIGA (Abiraterone Acetate).

We are here to support you as you embark on your upcoming series of chemotherapy infusions.

Have you had TAXOTERE chemotherapy infusions, in the past? We do have a comprehensive thread entitled "TAXOTERE SIDE EFFECTS?" that might give you some helpful insight, as you start your CABAZITXEL chemotherapy infusions.

We are here to encourage you and support you, as you embark on new treatments.

Be sure to check in, along the way, and let us know how you're faring.

I will watch for your future posts & updates.

Having been through chemotherapy, I am mindful of you, Starfinder.

My biggest lesson learned, during treatments? Take things ONE DAY AT A TIME & the treatment time ends up going by faster than you first envision.

Wishing you well, as new treatments commence ~

CYCLONE ~ # Iowa State University
Posted 7/31/2022 8:24 PM (GMT -5)
SIDENOTE~

An interesting "fringe benefit" of the two tiny 5 mg PREDNISONE pills I take each day, as required by the ZYTIGA (Abiraterone Acetate) regimen ...

Because of the tiny steroid tablets, I am not longer experiencing seasonal "hay fever" & allergies ~ which usually flared up in late summer and early fall, due to the high pollen count in the Midwest prairie region.

The first frost ~ typically in early October ~ brings blessed allergy relief ~ causing the pollen count to plummet!

Just an anecdote ~
C-Y-C-L-O-N-E ~ # Iowa State University
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