with drawl side effects or new side effects

[Chris52981]

My dads psa was rising so they switched prednisone to dexamethasone in may- the psa continues to rise- he dad get a cat scan a month ago chest, abdominal, pelvic and there was minimal change but do to not being as effective and because of my dad having swollen ankles and feet they took him off from Zytiga and dexamethasone -put him on xtandi- he now has been on 5 days and is very weak not sure if it's due to xtandi or because he is off Zytiga and steroid? Any others with this same issue. He stopped Zytiga and dexamethasone cold turkey on Sunday and went to Xtandi and still is weak. Not sure if this is a side effect that will go away from coming off meds or From starting new Meds.

[6357axbz]

dexamethasone should be stopped gradually over 2 or 3 weeks

[Tall_Allen]

Dangerous to "cold turkey" on dexamethasone! If his ankles were swollen, that's the last thing he should do.

[Chris52981 in reply to Tall_Allen]

I thought same thing and the ankles did go down now

[Chris52981 in reply to Tall_Allen]

can the dr have him take dexamethasone with the xtandi till they ween him off -

[Tall_Allen in reply to Chris52981]

yes

[Chris52981 in reply to Tall_Allen]

is dexamethasone 1 mg a big enough dose to need to be weened off

[Tall_Allen in reply to Chris52981]

That's a very high dose. 0.5 mg/day is more usual.

prostatecancer.news/2019/06...

[Parscore in reply to Tall_Allen]

Thank you for all the information you provide. I am about to stop Zytiga and the 5mg daily of pred. I am taking. I do not seem to be able to get a clear answer to how I discontinue the Zytiga and pred before I start Xtandi. Suggestions?

[Tall_Allen in reply to Parscore]

Discuss a schedule for slowly ramping down off of prednisone with your oncologist. Good idea to monitor BP as you do it. Zytiga can be stopped cold turkey.

[Parscore in reply to Tall_Allen]

Thank you I will try again to get some clarity from the oncologist.

[Dondodoc]

I was on Abi + pred for 2 years, stopped due to raised heart rates. Straight on to Enza within a short period of time became a zombie so Enza stopped . Continued to loose weight and general deterioration in health. Oncologist tried to improve by adding 5mg pred back to normal within few weeks, still taking pred after 18 months. Psa creeping up from 0.1 to 0.3 discussions re starting Enza again. Reminded him of last experience on Enza and said to him “could the effect have been suddenly stopping pred”. His comments err yes!! Not sure whether one can take Enza with pred?

[MJCA]

Whenever someone is on a steroid such as prednisone, the patient needs to be weaned off the med. Did the doc wean dad off? I.e. progressively smaller doses over one or two weeks? Or did the doc just stop the steroid?

[Chris52981 in reply to MJCA]

they just stopped he was on dexamethasone 1 mg

[MJCA in reply to Chris52981]

check with his doctor!

[Chris52981 in reply to MJCA]

I did and they are suppose to call Tom. Yes I checked and I wrote to them but they aren't there this weekend.

[dico]

My husband stopped Zytiga/Prednisone last December and is still suffering from low cortisol (adrenal insufficiency). I am not sure why doctors don't make it a practice to check their patients cortisol levels when they have finished the prednisone tapering process. It is a simple blood test that can be done at the same time that their PSA is tested. Just seems so simple.

[Chris52981 in reply to dico]

what did they do for it? Also when he at first got off was he very weak when he tried to walk- my dad is fine except when he tries to walk

[dico in reply to Chris52981]

When he reduced his prednisone from 10mg to 5mg daily he became very tired. The doctor advised him to slow down the prednisone taper but it didn't really help. When he completed the taper (but still very tired) he started taking Xtandi. Then things got worse. Within a week he was so weak that he mostly slept. He had to use a walker to get to the bathroom and fell down several times. He had no appetite and lost quite a bit of weight. Note that prior to this he felt great; walking several miles a day with his only side effect being hot flashes from the Lupron). He was on Xtandi for five weeks before the doctor finally told him to stop. We waited a couple of months hoping for him to build his strength back up but it was very slow. He is MSI-High so he was able to start Keytruda in May. One Keytruda infusion put his cancer into "remission" (PSA undectable and Pet Scan shows no cancer activity), but it also damaged his thyroid. At this point we were referred to an Endocronologist. I asked that she test is cortisol levels while she was testing is thyroid levels and sure enough he also had very low cortisol levels. Since then she has been trying to wake up his adrenal glands with hydrocortisone. This is a rambling response, I know. It might help to read some of my posts about both the Xtandi and Keytruda experiences. Bottom line though, is that he did not start feeling better until he was put on a high dose of prednisone and then gradually tapered down to a low dose of hydrocortisone. I hope your father feels better soon. I think that you are asking the right questions.

[Chris52981 in reply to dico]

Thank you! They put him back on and are going to wean him off and he goes for bloodwork and an appt Wednesday- thank you everyone I appreciate the feedback!

[Wolfee53]

Chris, have been on Eligard since March 2021, added Zytiga/prednisone January 2022, PSA undetectable. I do have side effects, but working through them by working out at Gym and playing pickleball 3 times a week. Let me know if you have any other questions.