I was diagnosed with PC in Jan 2001 with Gleason of 4+ and a PSA that never got above 10. From a PSMA scan, I have bone metasteses in skull, ribs, backbone, hips, pelvic bone.
WE believe that in my case PSA has never been a very useful measure.
I have been taking Abiraterone, Prostap and prednisolone, which have kept my PSA<0.01.
I also have a blood cancer and take hydroxicarbamide.
My side effects have been getting worse with pain in several bone areas, headaches, terrible brain fog and generally feeling awful. Of course no libido! QoL is non existant.
After discussing various options with my oncologist I am stopping Abiraterone to see what happens to my QoL.
Question: can I stop the Prednisolone as well? Does it have any effect if I stop the AA, although still having Prostap every 3 months.
Welcome any thoughts on the whole scenario?
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Stephen399b
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You have to slowly decrease the prednisolone. (However, it is part of the therapy for some blood cancers, so ask your oncologist). AA adds side effects to the lack of testosterone, but most of the side effects are caused by the Prostap, so adjust your expectations accordingly.
You may want to get an FDG PET/CT to monitor progression.
Not being a doctor these "opinions" are based on my personal experience and what was explained to me by my various doctors. Aberaterone is usually used in combination with other drugs to prevent the production of testosterone. I am not going to go into details here.
Stopping aberaterone only is not likely to change much in terms or QOL it you continue to use other testosterone inhibiting drugs.
As it was explained to me, the dose of prednisone use in conjunction with anti androgen drugs in not a therapeutic dose but is administered as a "replacement" dose to replace the hormones that are reduced by the other drugs. For this reason you are not considered to be "immune suppressed" as you might be with higher doses.
I am castrate resistant and have had orchiectomy but my doctors say that I still should continue low dose prednisone. I am not completely sure why. I have discontinued aberaterone because it was determined that it is no longer effective.
If your primary anti androgen and aberaterone are reducing your PSA I would not be quick to stop either of them. If your cancer is castrate sensitive it makes sense to continue anti androgen drugs. Even if "castrate resistant" this is not all or nothing. Some cancer cells will be castrate sensitive and some castrate resistant.
You need to make decisions based on what your "expert" doctors feel is right for your particular situation. Ask all the questions you can think of and do all the research you can but ultimately you need to find specialists you can trust and follow their advise.
You said: "I have discontinued aberaterone because it was determined that it is no longer effective. I am castrate resistant... but my doctors say that I still should continue low dose prednisone. I am not completely sure why. ."
Adrenocortical insufficiency? Could it be because, after years of abiraterone, your system can no longer make the adrenals that abiraterone suppressed?
That is my opinion. I stopped abi and tapered off pred. I became very fatigued and some days had to be in bed half the day. I thought it may be that cortisol is supressed even after being off the abi, so I started taking it again a few days ago. BIG difference! Fatigue is gone. Still get tired easily but not that bad. Going to talk to the MO about it.
From your bio, you started Abiraterone/prednisone in October 2021, and stopped it recently when you became castrate-resistant. So the Abiraterone only worked for 2-1/2 years, and then left you with adrenocortical insufficiency so you have to keep taking the prednisone.
I only have a Uro at present, just started Abiraterone/predinisone, and need to get an MO to talk about this, too.
Thanks for the explanation. I asked a few times and doctors never really explained it in detail. Adrenocortical insufficiency was never mentioned as the reason that ab was no longer necessary nor as the reason that i need to keep taking prednisone.
You said "Adrenocortical insufficiency was never mentioned as the reason that ab was no longer necessary nor as the reason that i need to keep taking prednisone."
The reason that they took you off Abiraterone would be that it no longer worked to reduce PSA -- you had become castrate resistant. The reason you need to keep taking prednisone would be because the Abiraterone de-activated your ability to make your own adrenocorticals.
See what TA said above. Even with a 5 mg dose of prednisone, you need to slowly taper of the prednisone. Some men can get away with not doing that, but other men cannot, and the consequences (e.g. adrenal insufficiency) are hard. I tapered slowly, and I still experienced similar symptoms as those described here by gsun. Tests revealed I was not producing my own cortisol. My MO sent me to an endocrinologist to sort things out. I am taking daily hydrocortisone until if and when my adrenals start to pick up the slack.
You beat me to it. I was going to add what Tall_Allen said awhile back, about Prednisone weaning:
"Slower is better. Maybe alternate days with 1 pill and half a pill for 2 weeks, then half a pill every day for 2 weeks, then alternate days of half a pill and no pills for 2 weeks, then half a pill every 3 days for 2 weeks. If your BP goes up, take more. The biggest danger of taking too little corticosteroid to replace what is lost is a condition called a "syndrome of secondary mineralocorticoid excess." This occurs because the pituitary gland reacts to the lack of cortisol by producing a hormone called ACTH (this is called "negative feedback"). ACTH increases the production of mineralocorticoids (like aldosterone), hormones that increase blood pressure, lower potassium and cause edema in the limbs."
In my opinion, based on personal experience, (not a doctor), you would benefit from lycopene intake and heat treatment of the metastases. I suggest you drink V8 juice four times a day for the lycopene. That and hot-hot showers on the skull mets and rib and other mets may eliminate the headaches and other pain. See my bio.
I suspect that pain comes from growth of the cancer metastases. Low PSA may slow progression, but not stop it. ADT similarly. Heat and consistent lycopene can stop it by killing the cancer cells without damaging good cells.
maybe i should plant some tomatoes. i can not eat commercial ones after knowing what a tomato really tastes like. many years i grew and ate so many that i had mouth sores from the acid. and no i do not like low acid toms.
i am actually having little pain from the bone mets. after three pluvicto treatments the one really painful one is much less so. i am having pain in my back that is position sensitive. no problem standing up but lying down it is difficult to get comfortable other than on face down which i do not prefer for sleeping. might an NSAID help? i also have morphine but it does not seem to address this sort of pain. it is not horrible just enough to add to the things that are keeping me from sleeping.
Agree you need to be tapered off the prednisone. Interestingly I am sitting in the MSP airport after seeing Dr. Eugene Kwon today and he has recommended I come off abiraterone but continue steroids. Will write up my circumstances in the future which are a bit different than yours. Also suggest you PubMed Abiraterone Acetate Withdrawal Syndrome it seems stopping Abiraterone can on occasion be more complex than just long term adrenal suppression by the steroids. Apparently not common but seems to be real. Ask your doctor if he is familiar with it and what are his thoughts.
Many thanks for this - very interesting. After a few days feeling poorly after I stopped the Abiraterone, I now feel a lot better and much less pain and fog. I am still taking the Prednisolone.
Glad you are feeling better. I do not take the concept of stopping Abiraterone lightly. I have had 3 scans (one Choline 11 PET/CT and 2 PSMA PET/CT) since my last targeted radiation (see my profile) in April/May 2023. My PSA has remained undetectable for over two years. My quality of life remains way better than I ever anticipate and this winter despite poor snow I skied 40 days, ice climbed two and continued to work two days per week. Kwon basically only sees complex Prostate Cancer and has a wealth of experience with people in my situation. So if I were to put stock in any ones recommendation to wean of ADT it would be his. Still this is a very hard decision for me despite believing I have a pretty good grasp of the risk of coming off and staying on maximal ADT.
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