Addison's disease: I stopped taking... - Advanced Prostate...

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Addison's disease

gsun profile image
gsun
10 Replies

I stopped taking Abiraterone three months ago to have a vacation. Was on it for six years. I tapered of the prednisone. I became very fatigued. Could hardly do anything in the morning and then limited things in the afternoon. then I thought of my low cortisol level (due to the abi) a couple years ago. My doc said to up the pred to 10mg/day. that did the trick. I started back on the pred a few days ago and feel much better. I had a talk with a hematologist and he said I had Addison's disease. this is a very serious condition. I was on abi for so long, my adrenals have stopped producing cortisol. I will be on pred the rest of my life.

If any of you have a problem like this, don't ignore it and think it will get better on its own.

One question I forgot to ask was are the adrenals incapable of producing testosterone as well? I will ask to be sure. EDIT: I asked and the testosterone is not affected by Addison's.

One more wonderful thing. I have elevated AST. Like 188. He says I have a virus in the liver and it will clear up in three to six months on its own. This can also cause fatigue. Oh joy! Lose , lose. At least he says, in his opinion, I don't have mets there. Will bring that up with my MO.

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gsun
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10 Replies
skiingfiend profile image
skiingfiend

Sorry to hear all this. Hang in there.

gsun profile image
gsun in reply toskiingfiend

Sorry to hear about your issue as well. I feel pretty good now.

Scout4answers profile image
Scout4answers

Sorry to hear this, the unintended consequences of the use of drugs for cancer.

garyjp9 profile image
garyjp9

Hi gsun, the same thing happened to me, and I was only on Abi + Pred for 2.5 years. I'm now on hydrocortisone (rather than prednisone) to provide the cortisol. I have not yet given up hope that one day my adrenals will wake up and I'll be able to get off the steroid. Good luck to the both of us. I always preach to men who are stopping the Abi +Pred protocol to be sure and taper off the pred SLOWLY. It amazes me that some men will cut it off abruptly and still get away with it.

gsun profile image
gsun in reply togaryjp9

What is your treatment now?

garyjp9 profile image
garyjp9 in reply togsun

After finishing RALP, RT, ADT and ABI + Pred, I am currently undetectable and holding my breath with each blood test. Because of the adrenal issue, I have to take hydrocortisone 15mg daily. How about you? FYI, it was recommended to me that I get a medical alert bracelet advising of "adrenal insufficiency." Haven't done it yet, though.

gsun profile image
gsun in reply togaryjp9

I take 10 mg. I was advised to get a bracelet or just carry a card, which is what I am going to do. Along with my pacemaker card.

garyjp9 profile image
garyjp9 in reply togsun

You are back on prednisone, right?

gsun profile image
gsun in reply togaryjp9

yes

akaipop3ps profile image
akaipop3ps

Sorry to hear that, I stopped prednisone (5mg) daily after on it for 18 months with not a lot of side effects.

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