Please share your experience with Abiraterone/Prednisone

Posted by ambika @ambika, Sep 3 9:36pm

My husband with localized Gleason 9 will be adding Abiraterone/Prednisone to his standard ADT (Orgovyx) soon. The list of side effects is daunting. I would like to hear from all who have been on Abiraterone about their experience with it. Did any one of you had to discontinue it due to intolerable side-effects? I will look forward to hearing from you all.

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Weight gain, shrunk in Peter, bigger belly, fatigue, manly boobs… but PSA <.01 since January 2025. No more ADT NOW. Fatigue still persists. LH tells the FSH to stop making testosterone in the tested..and it works. Got to ring the Bell after RT. It was fantastic. There ya go… hope this helps.

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I am 73, with oligometastatic PCa (prostate, plus a lymph node and a seminal vesicle). I've been on both Orgovyx and abiraterone (plus prednisone) for 6+ months. Abbie can be a bear with the side effects, but those can be mitigated with exercise and good rest. Because of the inevitable fatigue you won't necessarily feel like doing your resistance training, but once you get off the couch and do it you can maintain a good, active lifestyle. I lift as heavy as I can for an hour 3-4 times a week, and I run. I feel just fine, and haven't gained a pound. My naps are longer than they used to be, and those help. If you can do the work, QoL impacts from abiraterone (apart from ED and loss of libido) can be minimized.

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I was on abiraterone and Prednisone for 2 1/2 years. In all that time, my PSA was only undetectable one month. After I finished, I had a metastasis in my spine that I had to get zapped with SBRT radiation.

Abiraterone gave me high blood pressure, 5 afib Events, Each one ending me up in the emergency room, And gave me lots of hot flashes. If you have heart issues, it can be a real problem. I didn’t have heart issues before taking that drug.

I know people that were on it for five years that had no serious issues with it.

When you stop taking prednisone, you must taper it off over at least two or three months or you end up having major fatigue issues.

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Profile picture for guybe @guybe

I am 73, with oligometastatic PCa (prostate, plus a lymph node and a seminal vesicle). I've been on both Orgovyx and abiraterone (plus prednisone) for 6+ months. Abbie can be a bear with the side effects, but those can be mitigated with exercise and good rest. Because of the inevitable fatigue you won't necessarily feel like doing your resistance training, but once you get off the couch and do it you can maintain a good, active lifestyle. I lift as heavy as I can for an hour 3-4 times a week, and I run. I feel just fine, and haven't gained a pound. My naps are longer than they used to be, and those help. If you can do the work, QoL impacts from abiraterone (apart from ED and loss of libido) can be minimized.

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@guybe

In clinical oncology, methylphenidate (Ritalin) is sometimes prescribed off-label as a supportive care strategy to treat cancer-related fatigue (CRF). ADT reduces dopamine and norepinephrine activity in the central nervous system, leading to lethargy and brain fog. Methylphenidate increases these neurotransmitters, providing the wakefulness needed to participate in daily activities. By counteracting acute tiredness, methylphenidate can serve as a "bridge" to help patients initiate and adhere to resistance and cardiovascular exercise.

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Profile picture for Jeff Marchi @jeffmarc

I was on abiraterone and Prednisone for 2 1/2 years. In all that time, my PSA was only undetectable one month. After I finished, I had a metastasis in my spine that I had to get zapped with SBRT radiation.

Abiraterone gave me high blood pressure, 5 afib Events, Each one ending me up in the emergency room, And gave me lots of hot flashes. If you have heart issues, it can be a real problem. I didn’t have heart issues before taking that drug.

I know people that were on it for five years that had no serious issues with it.

When you stop taking prednisone, you must taper it off over at least two or three months or you end up having major fatigue issues.

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@jeffmarc
Thanks Jeff for sharing your experience. 5 afib events and ending up in the emergency room is alarming. However, it affects each individual differently to some extent. I hope it works out fine for my husband.

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I am 65 years old with a Gleason 8 and Decipher .62. I have been on Orgovyx since November of 2025. I started Abiraterone/Prednisone in January of 2026 and I stopped taking the Abiraterone/Prednisone on August 1st. My side effects included negative libido, depression, difficulty in concentrating, irritability, genital pain, increase in LDL cholesterol, and vivid nightmares. In the 5 weeks since I have stopped taking it, these side effects have lessened. At least now I am on the positive side for libido. My current PSA is .05
Everyone reacts differently. I stopped taking the A/P to recover my quality of life. My doctors recommended 18 months of Orgovyx and Abiraterone. I am stopping the Orgovyx at 10 months and my doctors are well aware of my decision. It is a difficult decision to make.

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I was diagnosed with Gleason 9, oligometastatic PCa 4 years ago. MO started me on Degarelix injections along with A/P followed by IMRT/SBRT in a couple of months. My PSA dropped to undetectable almost immediately and has remained so. I stopped the ADT therapy after 28 months. The desired effects of the combination of drugs and radiation resulted in a drop of my testosterone level from 403 to single digits, almost immediately. I have suffered with all of the loss of muscle mass, loss of stamina, general fatigue, anemia, etc. It was a gradual decline and I attribute all the negative symptoms as coming from the lack of testosterone rather than side effects of the ADT. Prostate cancer feeds on testosterone ... getting rid of it is the only way to keep the cancer at bay. I remain in remission and am able to carry on a reasonable lifestyle for which I am grateful. Unfortunately, there's no easy way out. Best of luck to you and your hubby.

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Profile picture for tjs911 @tjs911

I was diagnosed with Gleason 9, oligometastatic PCa 4 years ago. MO started me on Degarelix injections along with A/P followed by IMRT/SBRT in a couple of months. My PSA dropped to undetectable almost immediately and has remained so. I stopped the ADT therapy after 28 months. The desired effects of the combination of drugs and radiation resulted in a drop of my testosterone level from 403 to single digits, almost immediately. I have suffered with all of the loss of muscle mass, loss of stamina, general fatigue, anemia, etc. It was a gradual decline and I attribute all the negative symptoms as coming from the lack of testosterone rather than side effects of the ADT. Prostate cancer feeds on testosterone ... getting rid of it is the only way to keep the cancer at bay. I remain in remission and am able to carry on a reasonable lifestyle for which I am grateful. Unfortunately, there's no easy way out. Best of luck to you and your hubby.

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@tjs911
Thanks for your response. I am glad that now you are in remission. You are right to say that the side-effects (if tolerable) such as fatigue can be managed and must be managed as there is no other way out. The benefit of adding Second Generation drug, Abiraterone is significant.

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Profile picture for brewbeer @brewbeer

I am 65 years old with a Gleason 8 and Decipher .62. I have been on Orgovyx since November of 2025. I started Abiraterone/Prednisone in January of 2026 and I stopped taking the Abiraterone/Prednisone on August 1st. My side effects included negative libido, depression, difficulty in concentrating, irritability, genital pain, increase in LDL cholesterol, and vivid nightmares. In the 5 weeks since I have stopped taking it, these side effects have lessened. At least now I am on the positive side for libido. My current PSA is .05
Everyone reacts differently. I stopped taking the A/P to recover my quality of life. My doctors recommended 18 months of Orgovyx and Abiraterone. I am stopping the Orgovyx at 10 months and my doctors are well aware of my decision. It is a difficult decision to make.

Jump to this post

@brewbeer
I am sorry to hear that it was hard to tolerate the side-effects of Abiraterone and that made you stop taking it. I wish if Nubequa could be made available to all patients irrespective of being castrate resistant or not or having Metastasis or not. Nubequa is well tolerated and doesn't harm patients the same way as other ARPIs do .

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Profile picture for ambika @ambika

@brewbeer
I am sorry to hear that it was hard to tolerate the side-effects of Abiraterone and that made you stop taking it. I wish if Nubequa could be made available to all patients irrespective of being castrate resistant or not or having Metastasis or not. Nubequa is well tolerated and doesn't harm patients the same way as other ARPIs do .

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@ambika I am currently knee-deep in the process of deciding whether to take both Orgovyx and Abiraterone/Prednisone together, or just Orgovyx alone, and clearly, the subject is a complex one, based upon one's own history and circumstances.

However, I think it's extremely important to understand that Nubeqa (like Casodex before it), is an androgen "receptor inhibitor" (what you've called ARPI's), that block the uptake of 'existing' testosterone by its receptors, whereas Orgovyx, Abiraterone and Lupron, all stop the actual 'production' or biosynthesis of testosterone (by various means), which is a major difference in mechanisms of action!

And, by all accounts including my own, it's likely Lupron, Orgovyx, or Abiraterone, that are causing the bulk of the nastier side effects, especially (at least for me personally), the "vivid nightmares" detailed earlier here (above) by member "Brewbeer". For this reason alone, I literally 'dread' the prospect of any future use of either one (Orgovyx, Abiraterone or Lupron)!

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