I was diagnosed in May 2020, immediately put on Eligard and did a cycle of 6 doses of Taxotere. Following chemo, my PSA dropped into the low .2 area. In spring 2021 about 5 or so months after chemo, finally got radiation approved to debulk the prostate, and apparently one suspected local bone met that did not show up in nuclear scan after chemo but apparently radiologist treated anyway. After chemo, my psa dropped to the mid .1 range through August 2021. At my November 3 month PSA check, it jumped to almost .8, so retested in Dec - it was 1.7 or 1.8 range and so doctor ordered PSMA PET. One side note is that I got COVID vaccine in last week of August, and second dose in mid-Sept. Yes, I know, I know, correlation is not causation but I hold my hand up as another data point of well managed PSA coincidentally going out of the box after vaccination. Anyway, the PET came back with some new or lingering evidence in prostate, some evidence in four local lymphs, and right hip socket..all without any CT correlate, so seen only on PSMA PET. Blood lab yesterday showed PSA up to almost 3. So, trajectory definitely went out of the box. Oncologist has ordered up Zytiga, which I am to start next week when it arrives here from the remote pharmacist.
The pharmacist's discussion with me about it and the possible side effects sound horrific. The oncologist's office suggested I get a blood pressure cuff and call immediately if my BP goes over 90, which is sort of ridiculous because I have high BP anyway and typically at or near 90 anyway. Frankly, I have more anxiety about starting it than I did with chemo. For those of you starting or on Zytiga, what has been your real world experience with it? What symptoms did you experience and have they lessened over time?
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DD50
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It is considered by many the best tolerated of the new anti androgens (apalutamide and enzalutamide). Check your blood pressure , electrolytes, and hepatic enzymes.
I when first began taking Zytiga my MO monitored me via blood work closely for a month to make sure my internal organs weren't being damaged. Zytiga is best treatment I have had,
I don't believe the SEs were any worse for me than just being on Lupron alone. Perhaps some more lethargy, which besides loss of sex drive, is my biggest complaint about my PC treatment.
Similar experience for me. SE’s of Firmagon (and later Lupron) including hot flashes, joint arthritis and mental fog seemed to mitigate after Zytiga was added. Definitely did not make ADT
I had absolutely zero side effects from Zytiga, like most of us. You may have to monitor your BP more than you’d like, but plenty of exercise will help substantially with that.
Hello DD50, I have been on Zytiga since August 2020 and have tolerated it very well. Others have reported similar experiences. Typically prednisone is also taken to prevent hypokalemia (low potassium) and resulting elevated BP. If BP goes up cut salt intake and use a potassium based substitute. I requested to start with 5 mg prednisone instead of the 10 mg the oncologist wanted to prescribe. Blood pressure has been normal. I exercise often which may be helping the tolerance. Cheers, Phil
The way it was presented to me was prednisone is combined with Zytiga is to replace the cortisol that Zytiga has blocked the adrenal glands from producing. Prednisone tends to cause increased potassium excretion while reducing sodium excretion. So the sodium onboard goes up, while the potassium levels drop. That's why they say to eat potassium-rich foods and lower your salt intake whilst on prednisone. It can also increase your appetite.
I'm about a month into the Zytiga/Prednisone combo--I had about two days with just zytiga while the prednisone followed behind in the mail. Zytiga didn't bother me. But I had an immediate spare tire that I never had when I started prednisone. I'm still rebalancing but the first things I did were to reduce salt intake dramatically, lower my overall calorie load, and double how much water I drink to help the kidneys out.
Hello Lieto55, i was gaining weight after starting ADT, but managed to bring it down by following a time restricted feeding regimen: eating only two meals within 6-8 hours. Of course exercise also helped. Cheers, Phil
I was on Eligard when Zytiga+Prednisone was added. I did not notice any additional side effects from Zytiga+Prednisone. As others have stated intense daily exercise is key to mitigating ADT side effects!
I've been on Zytiga, Eligard injection along with Provenge infusions for four years now. Side effects weren't sudden with me more or less over the years. My PSA has been 0.1 since first month treatment and it's the only treatments I've had. S.E. loss of libido, weight gain, ankle swelling to name a few. The key to ADT is to stay active if you become a couch potato things wont be so tolerable. Never give up Never surrender. Leo
Thank you for asking a question that is top of my mind! My oncologist is recommending starting the Zytiga after I finish my radiation and I have some of those same concerns about the blood pressure
I have been on it for a year, PSA started at 15 then dropped to .7, now at last blood work last November was 1, getting blood work next week. I have noticed no major change, hot flashes were more intense but that had eased , full dose 1 hour before breakfast. A scan is due at the end of this month since the PSA is going up to check things out and may have to change medication . None of the terrible side effects and well tolerated, exercise is important. I am on blood pressure medicine due to all the medicine and due to family history at 70. I did notice a weight gain over the year so watch that.
Zytiga is a very effective medication for many people. My husband had to go off of it, because his blood pressure increased dramatically after 1.5 years on it. The issue resolved shortly after he stopped taking the drug. I hope it works well for you, as it can contribute to long remissions for people.
I was on Zytiga for 2.5 years, was given a BP Machine and told to track BP every day. My BP stayed well within the range I had always been in. The on real S.E. I had was some fatigue, but was still able to do my 1 hr walks.
wrt COVID vaccination, my shots had no discernible effect. The only change from trajectory came two months after my booster, when PSA dropped much more (on zytiga/lupron) than it had in prior months. But I seriously doubt there’s any causal effect.
wrt Zytiga: initially I had hot flashes, and can still get them if I’m in a warm room; easily managed. No real fatigue; my cycling and strength are as good as they’ve ever been, and likely the cardio/lifting contribute to very decent QoL otherwise. I typically need to watch out for edema, e.g. swelling in feet/ankles…addressed it the 1st time by raising prednisone from 5mg to 10mg. Now it’s happening again so we’re going to discontinue abi/pred to see if that’s the cause.
Bottom line, watch electrolyte levels, keep nutrition/sleep/hydration solid and get cardio/strength going to the max you can handle. With that strategy, I’ve done very well on zytiga.
I had minimal side effects on Zytiga which I was on for 8 months. The downside was from the prednisone which apparently caused a huge ulcer and I nearly bled to death (9 transfusions). So, even though the Zytiga worked well giving me an undetectable PSA, I am never to take prednisone again. Guess that rules out Zytiga too.
Quite a few positive responses ... unfortunately adding Zytiga to my treatment regimen didn't go as well. The first time, I took Zytiga and Lupron, after two months I had high marks on my liver function test -- so we stopped and just stayed on Lupron. PSA marker went back to <.01 without it. Approximately a year later after trying a short vacation (4 months) off Lupron PSA rose to 8.0 went back on Ellegard and Zytiga. Blood pressure went off the charts 190+ on occasion. Quickly got off it, BP back to normal and PSA back to <.01 which took several months. I'm very active and take my BP daily as it has been long time issue for me before aPC. We all have different "chemical soups" and adding Zytiga can make yours better or maybe "not". Sometimes it feels like we're living in a live game of wack-a-mole! Key word in that sentence is "living"! Peace & Energy ..
Re zytiga my dad is doing ok so far after 4 months no adverse events or labs. I also recommend through reading through zytiga leaflet from janssenlabs.
Afaik adt is far more dangerous than zytiga. Do you( or family) have history of cardiac events? We got the little home ecg machine but haven’t had to use it that much so far.
I'm sorry but I can't answer your question, however it may be a good idea to cut and paste your introduction and post it on your home page. Hopefully it will save you time and it will save other members time to view your bio. Well it does appear that the majority of the responses to your question is that Zytiga has very few side effects. Keep fighting those little bastards......
I’ve been on Zytiga and prednisone for 2 years with little side effect. PSA has been point one for six months. Orchiectomy and target radiation early in year one.
I had read of some men not tolerating the full dose.. So I talked my MO into starting me at 750 Mg (3/4 dose) for one month & I had no SE.. We than upped it to full dose & I have had low flatlined PSA since.. I am also taking BP meds & European Milk Thistle/w Dandelion combo & have had excellent liver readings all the time... Course it couldn't be from that combo as my MO says well there's never been a study done.. Well it works for good for me..
Hi Wife & I see a Naturopath Dr. 3 times a year & have great faith in him.. He only recommends the best & most pure supplements for us.. We get all our supplements from naturessunshine.com/ And have found them to be very beneficial. Here's specific info on there Milk Thistle Combination.. naturessunshine.com/product... also take there Kidney Activator (due to Kidney issues) its product No. 970
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In case anyone will be creating an account with them in order to purchase any of there products please use our account No. as a reference on the sign up form as we would receive a tiny bit of rebate.. Our account No. to use is 255009 Also more info on
I've had PC now for 27 years & at 78 yrs old I am still doing ok.. I think its a combination of good luck, good Dr.s, meds & supplements & healthy living.. Good Luck to all.
3 1/2 years on Zytiga with nothing but hot flashes. My oncologist recommended that I take black cohosh to help with the hot flashes. It has greatly reduced the number and intensity of my hot flashes. Initially I was on 10 milligrams of Prednisone. It made the skin on my hands really susceptible to brushing and bleeding. I went down to 5 milligrams and all is good.
I tried black cohosh for a short stint but did some research on liver impacts. It can be very dangerous--good to keep an eye on the liver numbers from the blood test. It also didn't have any effect on my hot flashes so it was easily subtracted. Same with Evening Primrose oil. BP can go up. It did help my wife's short bout with hormone-driven acne.
I have been on Zytiga now for 13 months, and with great results. PSA at <0.03 I feel great, hot flashes are the only real problem, but I can live with it. Exercise is very important. Hope all the best for you, keep fighting.
I was on Zytiga and Lupron for most of the past year. Med Onc recently took me off both to 'see what happens.' Doc did monthly blood work, but no issues came up. BP was fine and he told me I no longer needed to check it. SE's - maybe slightly more fatigue, forgetfulness than with Lupron alone, but really hard to tell. I would, and likely will, be taking it again. Best of luck to you moving forward.
I added abiraterone 1 year ago after 2 years on Lupron. The only significant change was blood pressure. After 10 months my blood pressure got too high and I started a blood pressure med (which was no big deal). PSA is now undetectable.
BTW, I believe that you will actually get generic abiraterone, not Zytiga.
I started Zytiga with prednisone in November 2021 after getting a Firmagon injection in October . I switched to Orgovyx in December so this is month 3 for me on Orgovyx and Zytiga . I started 26 sessions of radiation on January 12 . I will finish radiation on February 11 . I have many hot flashes daily . They were easier to manage in Florida - more difficult since I came up to NYC for radiation at MSK . I wake up covered with sweat in the night in a cold room . I get all bundled to go out into 15 degrees and I get a hot flash in the frickin elevator 🤪
I tried Effexor … totally stopped hot flashes but I felt shaky and toxic do I went back to hot flashes after 4 days . Tried a couple days of black cohosh root but it gave me diarrhea.Started Oxybutinyn a couple days ago but no benefit and I had trouble getting a urine stream going every time (4?) that I woke up in the night . Not sure if it’s the Oxybutynin. Will ask RO tomorrow.
Is this reply what’s called “ high jacking the thread .” Not sure I understand the concept.
I’m supposed to stay on these ADT drugs for 2 years . Taking it one day at a time as we advise in AA .
My husband was monitored while on zytiga. He did not stay on the drug very long due to liver enzymes going whacky. Liver enzymes bounced back in a week. I think he's going to retry after lynparza. Good luck to you!
I have had real good luck taking Zytiga.. But I convinced my MO to start me out at 750 mg (3/4 dose) for a month and I also take Milk Thistle Combo every day and my Liver readings have all been very good.. After a month with no SE we upped the Zytiga to the normal 1000 mg dose & I have been doing good on it.. With no SE other than a bit of fatigue.. (Naps ) For info on the Milk Thistle see naturessunshine.com/product... And also see my post a bit above this one in case u want to order some..
I took it for almost 2 years. About 3 months in I had a sharp drop in certain WBCs. Restarted in about a month later at 750mg. No major issues, possible small increase in BP. I don't thinknexercise can be stressed enough.
I began Abiraterone 3 months ago. It dropped my PSA from 34 to 13, then 6, followed by .03. The downside is, my liver enzymes went up, they took me off of it for 2 weeks, retested and my livers were back to normal. Followed by one month of pills, my PSA was essentially unchanged, but my liver enzymes were back up even more. I haven't yet started another round of a different drug as they are waiting for my liver tests in a couple of weeks once more.
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