Please share your experience with Abiraterone/Prednisone

@huskerbeans
Two weeks off of abiraterone Is like putting a drop of water in a glass of water figuring it would make a difference. It takes months before your testosterone comes back after being on abiraterone. You really need to be off of it for probably a year before your testosterone gets to a level where you do not feel those side effects. The problem is, however, that you’re Almost definitely also on another drug that drops the level of your testosterone. You must be on ADT using Orgovyx, Lupron, Eligard or one of the other drugs that is ADT.

All of these side effects “ hot flashes , enlarged breast, loss of libido, fatigue, blurry vision and depression” are also caused by ADT. You would have to be off both of them to really stop this from happening.

This is just one of the things you have to live with prostate cancer to keep it under control. I’ve been on ADT for nine years, And lucky people that doesn’t get fatigue, but I do get lots of hot flashes, loss of libido weaker bones, and I’ve lost a lot of muscle.

The hot flashes can be resolved by certain drugs, I was getting depo-provera Shots every three months and it worked great until I went on Zytiga Which made the hot flashes worse. There are a number of other drugs that can help. I also wear a Embrlabs Wave 2, It canreduce the hot flashes in the day and pretty much eliminate them at night. It’s a problem continues. I can also post a message about the drugs that work To stop flashes.

@jeffmarc
Thanks for the info. I'm definitely learning a lot. In addition to Abiraterone (1000mg/day) I take prednisone (5mg/day) and injection of Eligard every three months. Most of side effects are tolerable. The fatigue with shortness of breath is the worst. If I can regain some of my strength, at least I could be more active. Thanks again for you feedback.

@ucla2025
If the patient have metastasis then insurance might cover Nubeqa. Insurance refused to cover Nubeqa first my husband outright because he has localized Gleason 9 and is castrate sensitive.

@bikeman1
I have heard that Estradiol patches have much less side-effects than ADT drug’s like Lupron or Orgovyx (though Orgovyx is far better than Lupron shots).
It is possible that you have lesser side-effects overall from Abiraterone because you are using Estradiol patches.
How did you find a doctor who agreed to prescribe Estradiol patches. By the way I have heard from women who use Estradiol patches that there is a serious shortage of it and it is out of stock in many pharmacies currently.

I was diagnosed with Gleason 9, EPE and cribriform, PSA 6.93. In March of 2022, based on STAMPEDE TRIAL data, I opted for 24 months of lupron and abiraterone + prednisone with proton therapy for the RT. By June 2022, just prior to the start of proton therapy, my PSA was <0.03 and remained undetectable through May of 2025. Since then my PSA has been as follows:
Oct 2025 0.05
Nov 2025 0.03 (yes, the test was only one month later due to my concern of an uptrend)
Feb 2026 0.04
May 2026 0.07
Aug 2026 0.05

During the 24 months I was on lupron and abiraterone/prednisone I experienced the usual array of side effects. I ate a high protien and largely plant based diet, did aerobic exercise and resistnce training (at home without a gym membership) and took naps to supplement sleep all of which, I believe, enabled me to avoid the many potential comorbidities, continue to work as a contractor and enjoy a full scope of outdoor recreational activities ( with a bit less stamina). As of a year ago, I finally felt that I had regained my full strength, stamina and quality of sleep. Life has returned to pre-treatment normal.

While staying the course was frequently a challenge, actually reviewing the data on the STAMPEDE Trial to remind myself of my very real outcome possibilities, both positive and negative, was helpful as was being in touch with others on this journey by way of Mayo Clinic Connect.

While abiraterone and lupron are no longer the latest and greatest, they were/are certainly both effective and were tolerable for me.

Best wishes to you and your husband for success in his walk with PCa.
Bill

OK, I understand. Wishing you the best.

@huskerbeans
Abiraterone can give you a lot of fatigue. Some people have way too much and there is a solution. The standard prednisone dose for abiraterone Is five or 10 mg. If you are on 5 mg and find that you are tired more than you should be, ask your doctor to prescribe 10 mg and see if that will work better for you. I’m not sure that is a problem you have but I thought I’d mention it.

I know people that have done this and it’s really helped a lot.

Fatigue from the drugs can usually be overcome by exercise, It seems counterproductive, but it does work. Of course, if you have breathing problems, you may not be able to do too much, Other thing you just should be aware of if you have not heard it before.

@ambika
Yes, that is why I went with the patches instead of Orgyvx or Lupron--many fewer side effects. For example, the patches will strengthen your bones, while the others will weaken them.
I don't know if somehow the patch moderates Abi/Pregnisone side effects, but in any event I feel very lucky in the side effects department.
You are correct that it's hard to find a doctor willing to prescribe the patches. I suggest you go to estradiolinitiative.org and ask them for help finding a doctor in your area. They are incredibly responsive and helpful. And thanks for the heads up on the patch shortage.

My husband takes it. He was diagnosed with stage 4 about 18months ago
They started him on firmagon injections, he was supposed to switch over to lupron but wanted to stay on it
Soon after diagnosis he started taking all sorts of supplements and it wrecked his liver so he couldn't start zytiga but once he quit those supplements his liver reset and he started zytiga.
He wakes up at 5am to take it and steroids
Then drinks black coffee and reads his Bible, around 6 he goes to the gym for around 2hrs
He doesn't sleep well but that's also because there's no testosterone!
Of course bo libido and hot flashes and night sweats, but we got a bed jet and it's been awesome!
He's more tired and feels like a shell of a man but he looks great and now numbers are great too. So great that they are talking about giving him an ADT /med break!
Back at diagnosis his PSA was almost 300 and psma showed it all over his body!
Now his PSA is 0.04 and we're waiting another scan but the last two were much better! (He did do chemo last summer too)
So overall side effects are manageable but annoying.
My husband didn't want to take it at first, he'd rather die than lose his manhood!
It's been hard! Cancer sucks!!

@dailyeffort Yes--Abiraterone and Lupron kept my husband's Stage 4 cancer suppressed for over three years, without severe side effects. So for some men, it is a good option.