Zytiga side effects : Hi All, I... - Advanced Prostate...

Advanced Prostate Cancer

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Zytiga side effects

MJCA profile image
MJCA
75 Replies

Hi All,

I started Zytiga one week ago. The biggest problem I am having is sleeplessness. Even with taking Restoril, a sleeping pill, I average between 3-4 hours of sleep per night. I’m a freaking zombie. My MO prescribed Trazodone for sleep, but I believe Restoril is stronger.

Also had anyone experienced any joint pain? My right hip (which was replaced 10 years ago) aches ALL the time.

Thank you!!

75 Replies
mrscruffy profile image
mrscruffy

I hate sleep aids. I use THC smoke before bed then take an edible. Puts me to sleep and keeps me asleep. When done properly no fatigue in the AM

MJCA profile image
MJCA in reply to mrscruffy

My cannabis days are behind me. All I found was that it made my wallet thinner and my waistline bigger!

rsgdmd profile image
rsgdmd in reply to MJCA

Medical cannabis is a different animal. I take a tincture about half an hour before bed and really helps.

London441 profile image
London441 in reply to MJCA

CBD oil can help with sleep. I take it regularly.

My cannabis days are behind me also. Some who enjoy it will tell you different forms strains etc make a difference but if you intentionally want no part of it anymore they’re essentially all the same.

I won’t beat the dead horse, just glad you are addressing the prednisone issue. How much fat are you carrying and what are your exercise habits? Zytiga shouldn’t be this tough.

Tall_Allen profile image
Tall_Allen

Do you take prednisone early in the morning? It can keep you awake. Joint pain is common.

MJCA profile image
MJCA in reply to Tall_Allen

Allen,

For time being I am not taking prednisone. I will get blood work every 2 weeks as well as checking my BP daily. I don’t know what the issue is.

Tall_Allen profile image
Tall_Allen in reply to MJCA

Dangerous to not replace lost cortisol - you will feel like shit and pains will be worse.

Seasid profile image
Seasid in reply to MJCA

Can you please explain better what are you doing?

You should take Abiraterone on empty stomach and you should probably take at least 5mg of Prednisone morning and check your blood pressure regularly.

If your blood pressure is high you should try 2x per day Prednisone.

I believe not taking Prednisone is very dangerous. Can you ask your MO for opinion on that?

Is your cancer CRPC?

Seasid profile image
Seasid in reply to Seasid

How much Abiraterone are you taking?

MJCA profile image
MJCA in reply to Seasid

4 pills/1000mg

MJCA profile image
MJCA in reply to Seasid

I spent 40 minutes with the pharmacist prior to getting the Rx. Yes, it is taken on an empty stomach. I don’t eat anything until at least 2 hours after I take the med.

I am not taking Prednisone currently. I take my BP every morning. Yes, it IS in normal range.

My MO and I decided to try without steroids. I will have my blood checked bi-weekly.

NO my cancer is mCRPC. It’s ALL in my profile.

Tall_Allen profile image
Tall_Allen in reply to MJCA

You seem to misunderstand the role of prednisone taken with Zytiga. It is to REPLACE the cortisol that Zytiga takes away. It is not to add extra beyond what is normally produced by the adrenals.

Many patients google prednisone and think "I don't want to take that." But that is because they are reading about the effects of taking extra corticosteroids. Men who take prednisone with Zytiga are not taking extra. They are only taking a replacement dose.

The syndrome of secondary mineralocorticoid excess is just one of the many effects of not replacing the lost cortisol. It occurs because the pituitary gland reacts to the lack of cortisol by producing a hormone called ACTH. ACTH increases the production of mineralocorticoids (like aldosterone), hormones that increase blood pressure, lower potassium and cause edema in the limbs.

But cortisol has many functions, including energy production, control of inflammatory response (e.g. arthritis), and preventing runaway immune response (I'm surprised your MO is letting you do this so soon after taking Provenge). It also has mental effects, affecting mood and memory formation. Symptoms of too little cortisol may include fatigue, dizziness (especially upon standing), weight loss, muscle weakness, joint pain, mood changes and the darkening of regions of the skin. Without treatment, this is a potentially life-threatening condition.

Glucocorticosteroids have been found to have independent anti-cancer activity:

ncbi.nlm.nih.gov/pmc/articl...

MJCA profile image
MJCA in reply to Tall_Allen

Thanks for giving me the details. I assume the longer I do not replace with prednisone, the damage to me can become more serious. I will ask my my MO on Monday. Would prednisone possibly increase my sleeplessness?

Tall_Allen profile image
Tall_Allen in reply to MJCA

As long as you take it in the AM, it's no problem. The goal is to simulate the diurnal variation of cortisol, which peaks when you wake up and hits a minimum at night.

Seasid profile image
Seasid in reply to MJCA

Why do you believe that the Prednisone is causing that you can't sleep? Do you sleep now better without Prednisone?

I don't take any Prednisone and still have problems sleeping.

MJCA profile image
MJCA in reply to Seasid

Dude. I never said ANY of that. Reread what has been written.

Seasid profile image
Seasid in reply to MJCA

Why don't you just simply try Enzalutamide instead of Abiraterone?I wanted to ask you this question before.

MJCA profile image
MJCA in reply to Seasid

If the patient has prior experience with any injuries/issues with the brain, one is not a good candidate for that medication. Unfortunately, five years ago I passed out and my head hit a concrete floor very hard causing a hemorrhagic stroke. That rules out enzalutamide.

Seasid profile image
Seasid in reply to MJCA

Could you contact centers of excellence for second opinion?

I bet that they could give you much better advice than members of this forum as not too many of us has a similar situation like you.

MSKCC or Dana Farber cancer institute or maybe Dr Sartor or you could even try to contact Dr Fred Saad in Canada. All of them should be able to help you better, especially if you don't even state everything about your health issues. This was for me a very good Post so we are all thankful for that, but we have some limitations. Therefore contact some top oncologist about your special situation and say everything to them what you believe that could be relevant.

MJCA profile image
MJCA in reply to Seasid

I have faith in my MO.

BS, Biomedical Engineering, Duke

MPH, Harvard

Stanford Medical School

Residency, UC San Francisco

He is now an Associate Professor at Stanford and practicing Oncology at Stanford mainly in prostate. He listens, he is compassionate. We discuss issues.

Seasid profile image
Seasid in reply to MJCA

That is great. You have a best possible care.

Seasid profile image
Seasid in reply to MJCA

In your situation the last thing what you want is to develop high blood pressure.

MJCA profile image
MJCA in reply to Seasid

As I stated previously I TAKE MY BP EVERY DAY.

Seasid profile image
Seasid in reply to MJCA

That is very important.

Seasid profile image
Seasid in reply to MJCA

Ok, I understand now. I just assumed that everyone is talking Prednisone with Abiraterone, but it looks that you convinced your MO not to prescribe Prednisone in order to avoid weight gain. Your MO should explain you better your therapy. Did he say to you that you would just replace the lost cortisol as a result of Abiraterone therapy and it would probably not result in weight gain, but you would avoid high blood pressure what is really not in your interest.

Muffin2019 profile image
Muffin2019

When I was on it I took the predisone and the drug in the morning, no problem sleeping.

Bronzee profile image
Bronzee

When do you take Zytiga ? Do you take prednisone? I have been on this and sleeplessness has not been a problem. Hope you find a solution.

MJCA profile image
MJCA in reply to Bronzee

Not to be rude but EVERYONE is asking me the same questions ad nauseum. Please see some of my earlier replies. Thanks.

Chrisbaird profile image
Chrisbaird

4 x 1000gms daily seems a lot of Zytiga. I’m on 500gms daily with 5 gm prednisone

smurtaw profile image
smurtaw in reply to Chrisbaird

He's taking 1000 mg a day. That is a standard dose.

MJCA profile image
MJCA in reply to smurtaw

🤦🏻‍♂️

bean1008 profile image
bean1008 in reply to Chrisbaird

You are not on the standard dose. You might ask why you’re only on 500mg.

Chrisbaird profile image
Chrisbaird in reply to bean1008

I was on 1000gm but had liver enzymes after 3 months so went on to 500gms daily and that had maintained by PSA at 0.01> but know if PSA rises I’ll need to increase

bean1008 profile image
bean1008 in reply to Chrisbaird

I would love a lower dose as I wonder if it will help me with my fatigue issues. Did you notice any difference in the side effects when you went lower? Best wishes Chris!

Chrisbaird profile image
Chrisbaird in reply to bean1008

probably less fatigue more energy but was only on 1000gms 3 months so hard to tell really the 3 monthly Protrap hormone injection with hot flushes have been my main side effects

Kittenlover50 profile image
Kittenlover50

joint pain common with zytiga.. you could try limiting processed foods, white sugar white flour red meat daily. All cause inflammation and those with arthritis say it helps. Prednisone would be like 5 mg and taken with food. It’s a pretty low dose. If taken in am shouldn’t cause sleeplessness. Zytiga on empty stomach. Bill always took it when he got up during nite. Only missed one dose in 18 mo.

Sisto profile image
Sisto

I agree with TA and others about the need for replacement steroids while on Zytiga. If you check manufacturers data, they consider them a mandatory adjunct with Zytiga.

I took 1000 MG zytiga upon waking, then hour after, w/ breakfast took 5MG prednisone. No problems sleeping with that. After PSA started rising again (after several years) MO replaced prednisone with 0.5MG dexamethasone, a much more powerful steroid that did cause sleep problems. It did give me a six month honeymoon with Zytiga, though. Good luck Monday!

daleboy3 profile image
daleboy3

The joint pain your experiencing is stated in the side effects on the leaflet along with 8 other side effects that are not good so I suggest you talk with your doctor

Concerned-wife profile image
Concerned-wife

I think Dr Vozelzang discussed no prednisone in a PCRI video.

Here is an article about this. urotoday.com/conference-hig...

My husband had to increase the 5 mg of prednisone to 10 and finally went off abi due to cortisol issues.

Tall_Allen profile image
Tall_Allen in reply to Concerned-wife

Thanks for the link. It shows the importance of taking it. The importance goes beyond preventing the syndrome of mineralcorticoid excess. While a few patients may not develop that syndrome in the short term, many men take abi for years and the effects of being cortisol depleted go far beyond that syndrome.

I also think the replacement dose is very individual. 5 mg for mHSPC and 10 mg for mCRPC is a starting point. Some men need less but I think many need more.

Seasid profile image
Seasid in reply to Tall_Allen

Thanks for the clarification. My MO said that I may need only 5mg of Prednisone. I am probably mCRPC without visible mets and with a radiated prostate. Interesting.

MJCA profile image
MJCA in reply to Tall_Allen

Allen,

How are Hormone Resistant and Hormone Sensitive differentiated? I REFUSE to use the term “Castration”. PC is emasculating enough without using that term !

As Always,

Thanks!

‏חג שמח

Seasid profile image
Seasid in reply to MJCA

I agree with you, but unfortunately they coined this terms.

I actually don't know if I am hormone sensitive or CRPC now. My PSA was rising from 0.2 to 1.5 inside a year with the PSA doubling time of less than 3 months and then we did the PSMA PET scan and decided to irradiate my prostate.

The prostate gland had an SUV max value of 14 and the cancer was present in 95% of my prostate.

I didn't have any visible mets on any scan (PSMA PET scan, CT with contrast, FDG PET scan and nuclear medicine bone scan.)

We killed with SBRT MRI Linac the cancer in my prostate so I don't really know if I should take officially 5mg or 10mg Prednisone.

My MO said that I should take 5mg Prednisone with Abiraterone. He wants to see me on 1g of Abiraterone plus 5mg Prednisone per day and he doesn't recommend enzalutamide but would be ok with that if I really don't want to take Abiraterone.

Tall_Allen profile image
Tall_Allen in reply to MJCA

Castration resistance (I agree with you, but it is useless to expect the entire medical establishment will change) is a process, not a binomial event. Usually MOs will give mCRPC-approved medications when in spite of ADT, there are new/larger metastases, pain, PSA is above 1.0, or PSADT is rapid. They often follow the PCWG3/RECIST1.1 criteria for progressive disease.

ncbi.nlm.nih.gov/pmc/articl...

smurtaw profile image
smurtaw in reply to Tall_Allen

Yes. Some men need more. I'm HSPC. I started with 5 mg. Went to 10 and then 15 and then settled at 10.

Also, I do not know for sure that this was responsible, but I had extreme hypertension and fatigue when I took AA. My MO said to drop my dose. I dropped but then slowly titrated back to 1000 mg/day. No problems and it's been almost two years.

MJCA profile image
MJCA in reply to Concerned-wife

Thanks for the info. Unfortunately, a sample of only 60 is really too small to provide any empirical evidence.

Hemoon profile image
Hemoon

my experience with Zytiga was short. I could not tolerate it - caused my blood pressure to rise to super high numbers. Tried stopping and starting 3 times. Same result. It took about 2-3 weeks for the BP to start moving, so watch for that.

chickgreen profile image
chickgreen in reply to Hemoon

I was about six months in on the Abiraterone, and just stopped yesterday because of a blood pressure issue. How long after stopping did it take before your pressures came down?

Hemoon profile image
Hemoon in reply to chickgreen

it took about 3 weeks to get back to normal Just slowly came down each day

Seasid profile image
Seasid in reply to Hemoon

Very useful information. Thanks

smurtaw profile image
smurtaw in reply to chickgreen

Were you on prednisone also? Make sure you don't go cold turkey on the prednisone. It takes about a month for AA to clear and CYP17 to regenerate. Your MO should have a prednisone taper schedule.

I had severe hypertension after a few months on AA. I stopped and then slowly titrated back up. No problems (it's been two years). I don't know for sure that was the cause though.

chickgreen profile image
chickgreen in reply to smurtaw

She's given me a taper schedule of about a week - I was on only 5mg daily

Hemoon profile image
Hemoon in reply to smurtaw

Yes, I was on Predisone at the same time. My oncologist and I did some testing to isolste Zytiga as the driver of the high BP. When I first started taking it, my BP went way up after 2-3 weeks. I suspected the Zytiga, but not sure. Stopped takingand the BP returned to normal, but again no way to know for sure. Then we started up again and 2-3 weeks later the BP went up. But this time it was concurrent with radiation, so we decided to stop until that was over. About 3 weeks after radiation and a stable BP (I was taking my BP twice a day at home and recording it), the oncologist started me on 2 pills a day, instead of 4, to see if there was any reaction. Sure enough, 2 weeks later my BP was 150/something and climbing every day. Zytiga was stopped and Xtandi was started once the BP came back down. I just followed the oncologist direction with regards to the predisone and for allowing time to let things reset

Seasid profile image
Seasid in reply to Hemoon

Did you stop and start Prednisone also? Or did you continue with Prednisone all the time during this experiment (stoping and starting Abiraterone)?

Hemoon profile image
Hemoon in reply to Seasid

stopped and started both

Seasid profile image
Seasid in reply to Hemoon

You have to slowly reduce the dose of Prednisone.

jptss profile image
jptss

Thus was a good conversation I evan learned new things, but mrscyffy is correct edibles and the is best but you will get up3 to 4 times in a night. Get use to it and make the best of every nights sleep makes the morning 🌄 better.

MJCA profile image
MJCA in reply to jptss

What is good for one may not necessarily be good for all!

Thanks v

Painterism1 profile image
Painterism1

I've been on Zytiga and prednisone for a little over 2 years. It's brought my PSA from 111 to undectable. My side effects, (everyone is different) have been fatigue, at times feeling very unwell, as well as cognitive impairment. Prednisone has caused weight gain of my belly.

MJCA profile image
MJCA in reply to Painterism1

The weight gain is why I refused steroids. I used to weigh 350lbs. Seven years ago I had gastric bypass and lost 200 lbs. After all that work, I REFUSE to allow myself to gain any weight. I would rather go on docetaxel than go on steroids.

smurtaw profile image
smurtaw in reply to MJCA

Congrats on the weight loss!

icanwintwice profile image
icanwintwice

ive had alot of luck w edibles just bfor bed. Seems to mitigate the hot flashes, or I sleep through them?, either way it works well for me. I sleep between 8-10 hours nightly on those. Good luck

noahware profile image
noahware

Although it would be counterintuitive, and I couldn't guess the mechanism(s) by which it might happen, what if adding prednisone in the am actually IMPROVED your sleep quality?

If the imbalances caused by failing to take prednisone with Zytiga are messing with your bodily systems in ways that are throwing some systems out of kilter, it seems at least remotely possible that these imbalances might result in disturbed sleep.

The only way you will know is to add the suggested prednisone dose. I'm sure within days you will observe that either 1) you are sleeping better, or 2) you are sleeping worse, or 3) there seems to be no difference.

I am currently taking an occasional 0.5 mg dose of Lorazepam on nights when minor pain or anxiety are preventing me from going to sleep. On the even more rare occasion I will double that to 1.0 mg (still a fairly low dose) which serves pretty well to knock me out and keep me out for a bit longer, even though needing to pee is going to wake me up anyway at some point. On that dose, I tend to fall back to sleep more easily, too. So perhaps consider that drug as an option.

MJCA profile image
MJCA in reply to noahware

Hi,

I have had this motherfucker of a disease > 17 years. Back when I was 45, I was awaking at night 6 x to urinate. Since then I have been on 15 mg of Restoril, a bonafide sleeping pill. My doc increased the dosage to 30mg yesterday. I need a restful sleep. I have no significant other, no siblings and no parents. I have to do all my errands, cooking , cleaning and shopping on my own. I started volunteer work one month ago. I need a full night’s sleep to get through my day.

Miomarito profile image
Miomarito

Mark, my husbands hip aches and also has weird itching on his back that comes and goes. He has been on Zytiga for a month with 5mg P. He sleeps well, with only having to go to the bathroom that wakes him up. I am sorry you are having sleep issues!

MJCA profile image
MJCA in reply to Miomarito

Thank you. Itching could be a sign of an allergic reaction. I would definitely let his doctor know.

Calhoun113 profile image
Calhoun113

I’ve been taking Zytiga/P almost 2 years. I always fell into a deep sleep immediately which only lasted about 2 hours. After each bathroom trip, I would lie awake and gradually get into a very light sleep state. Some times I would be awake the rest of the night with my mind racing. I found after reading encouraging news on this forum, I would sleep better :) seems last few months, I am falling into a medium slumber when wake up after my bathroom trips. My head feels pretty good. Don’t even need my morning decaf. Naturally I have to push myself to do exercises but it’s do-able. Bone pain/ aches from time to time, comes and goes. Everybody is different. Low stress/good diet/exercise. Truck on. Just my two cents. 

austinsurvivor profile image
austinsurvivor

I take thc gummies (10mg) nightly....still wake up early some days, but generally I manage 6+ hrs with the gummies, but more like 4ish hrs without them.

MJCA profile image
MJCA in reply to austinsurvivor

I am done with THC and CBD. But, thanks. Glad it works for you.

Lavender22 profile image
Lavender22

My husband takes melatonin to help him sleep—but see what your doc says since you’re already taking a sleeping aid.

bean1008 profile image
bean1008 in reply to Lavender22

I’m a melatonin fan as well… I only wake up one or two times in the night and generally I can fall right back asleep. If I can sleep seven hours altogether I am happy.

XYZdrugs profile image
XYZdrugs

I have been on it for 5 years and have no trouble sleeping. I was on Xgeve for 4 years to protect bones and joints.

MarkBC profile image
MarkBC

I started abiraterone and prednisone about 2 months ago. I have always been up at least twice during the night to urinate. Lately I'm finding it difficult to sleep at around 2 am and can be wide awake for 2 hours. I was wondering if it was the medication. I was going to talk to my oncologist about it when I see her after the holidays.

bglendi53 profile image
bglendi53

I had a lot of side effect pain while on Zytiga for only 4 months. And the pain was very intense, but my MO office acted like I was exaggerating. But since being off it since mid October, I've had nothing even close to that. Plus my PSA went from 33 to 220 in those 4 months.

Spyder54 profile image
Spyder54

I MUST take the Prednisone in he mornings. If I take at night, I toss & turn. Mike

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