Zytiga withdrawal symptoms

[sleepless-in-seattle]

I was told I could stop Zytiga without any tapering. So I did so but now I have flu like symptoms. No fever but headache, shakiness, and fatigue. General feeling of unease. Anyone else have this experience? If so, how long do these symptoms last?

[Kentucky1]

I stopped "cold turkey" about a week ago. I was on it for over 3 years. I agree with the fatigue, but hard to say it's much different than from the Lupron shot I just got. My feet are a little swollen, but no other issues. I guess we're all a little different. What's your next step?

[sleepless-in-seattle in reply to Kentucky1]

I was on 5mg prednisone along with the Zytiga but stopped that cold turkey also. Based on other feedback, I'm going to try going back to the 5mg prednisone and then cut back slowly. Thanks for replying.

[bglendi53 in reply to sleepless-in-seattle]

Yea, I just started the Zytiga and Prednisone and my doctor did mention you have to ween off the prednisone. I have no idea how long I might be both of these.

[dico]

My husband had a horrible time but we were told it was stopping the prednisone that was the cause. Were you or are you taking prednisone? My husband had been taking 10mg of prednisone for two years while he was taking Zytiga. When he stopped Zytiga, he cut his prednisone down to 5mg and started feeling very ill. So we took our time and went from 5mg to 0 very slowly.

[sleepless-in-seattle in reply to dico]

I was taking 5mg prednisone and stopped cold turkey. I'm going back to that and then cut back slowly. Thanks for the feedback.

[Tall_Allen]

You can stop Zytiga cold turkey, but not prednisone.

[Kentucky1 in reply to Tall_Allen]

I had always thought that the prednisone we were taking was just intended to replace the cortisol that the Zytiga was preventing the adrenal glands from manufacturing via interference with the Cyp17 enzyme. If it was truly a replacement dose then once the action of Zytiga was stopped, then there would be no need for prednisone supplementation. Judging from the responses here it seems that the Zytiga may have a lasting effect after stopping that still calls out for prednisone. These prednisone doses are very small in the scheme of prednisone dosing, so small that I am surprised any tapering is necessary. I was on dexamethasone when I stopped the Zytiga, maybe because of it's longer half life I didn't see the issues that the others have seen. I guess we all are a little different

[Tall_Allen in reply to Kentucky1]

"If it was truly a replacement dose then once the action of Zytiga was stopped, then there would be no need for prednisone supplementation."

Human biology has other ideas. Zytiga inhibits the enzyme needed for cortisol production, and stopping Zytiga would normally allow cortisol to build back to normal levels. But the pituitary, sensing no cortisol, releases adrenocorticotropic hormone (ACTH). ACTH increases the production of mineralocorticoids (like aldosterone) as well as glucocorticosteroids (like cortisol). Mineralocorticoids are hormones that increase blood pressure, lower potassium and cause edema in the limbs. So by stopping suddenly, one gets a paradoxical burst of both kinds of hormones. If one tapers off slowly, the corticosteroids will slowly come back to normal, without the steroid flares.

[CAMPSOUPS in reply to Tall_Allen]

Thank you. Explains well the jist of what I have known from my steroid use during chemo.

However I am a "dunce" concerning the properties/activity of Dexamethasone in comparison.

So when making the switch Prednisone to Dexamethasone is tapering of the Prednisone still necessary? Then of course taper off the Dex when the time comes to discontinue it.

I would think the switch could be made without tapering the Prednisone.

[Tall_Allen in reply to CAMPSOUPS]

I agree! Both prednisone and dexamethasone are biosimilar to cortisol. Here's a chart that compares their activity:

prostatecancer.news/2019/06...

[j-o-h-n in reply to CAMPSOUPS]

I disagree, you're not a "dunce" you're a PITA.......... 😈 😈 😈

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/15/2022 5:36 PM DST

[Kentucky1 in reply to Tall_Allen]

Makes sense that my feet are retaining fluid post stopping the steroid. How long do you think it takes to stabilize and return to normal?

[Tall_Allen in reply to Kentucky1]

IDK. Compression stockings and keeping feet up may help. If bad, drugs like eplenerone or lasix.

[KAgolf in reply to Tall_Allen]

my hubby was putting his meds together for a few weeks and inadvertently missed the prednisone bottle.....NOT GOOD!!! he didn't tell me when his feet and lower legs swelled to about 1.5 x normal--was wearing long pants (in 95 degree weather) to hide, and he had trouble walking with such swollen feet. When I noticed, I think he'd been off pred (10mg) for 2 weeks; I didn't know that either---I ask him every day if he took Zytiga and Pred. and always said yes-- he finally said he didn't know where pred. was. I had looked up symptoms and was sure that was it.

his worthless MO wouldn't return call or respond to fax--got him into see our primary

and everyone agreed it was stopping prednisone cold turkey (by mistake) but was still taking his Zytiga....hoping this didn't affect Zytiga working for those 2 weeks.

I got him back on prednisone immediately, put ice packs on ankles and feet, got them REALLY elevated (low chair + footstool with pillows on top of a box), had him use warm Epsome salts foot bath a couple of times, and gave him magnesium supplements. took about 4-5 days for swelling to go completely away

His was very weak--had to get him my (knee replacement) walker and help him get out of chair. He slept an incredible amount. fatigue and weakness still an issue and this is 3 weeks after we got him back on pred.

The morning we were to see primary care, Jeff fell on left hip and leg on tile floor while I was outside----very painful so doc also ordered X-Ray which was OK--almost 3 weeks, and he still has very sore upper thigh, but hip doesn't hurt anymore--X-Ray was only of hip--had no visible bruising on either.

Doc did bloodwork and it was very scary--life threatening someone said:

• Low BUN levels are rare. below 7 mg/dl is critically low. (Jeff’s was 3 on 6/28 and had been 12 on 5/5)

•Creatinine dropped from .73 to .5 (his has been borderline low since 2004)

•The ideal ratio of BUN to creatinine is between 10-to-1 and 20-to-1. (Jeff’s was 6-1 and had been 16-1)

•eGFR was good --139

his Protein, Albumin and ALT were low; Bili was high, which correlates with low RBC, HCT, and HGB

He gets more blood work in about 10 days for his next MO app't. and Elligard injection. We're hoping all is back to "normal"

SO, BOTTOM LINE of my very long post (apologies) is that suddenly stopping prednisone can be very dangerous as well as having unpleasant side effects. Very glad to have some good info. here for when he gets off Zytiga and how to taper pred. if not told by doc.

[j-o-h-n in reply to KAgolf]

Apologies not required.... we thank you for your timely post. Bless you both.....and we are also hopeful that with his accident (fall) he's getting back to normal.

p.s. Tell Jeff to stop taking a swig of whatever he has in his flask whenever you step outside for a few minutes.....😝😝😝

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/15/2022 5:52 PM DST

[KAgolf in reply to j-o-h-n]

I will tell him you said to stop it, but that particular day he wasn't eating or drinking😂

[Cateydid in reply to Tall_Allen]

Gosh you’re smart!!!!

[KAgolf in reply to Cateydid]

oh, and I thought you were talking to me....LOL

[EdBacon]

Agree with the others about the steroid. It can take quite a while to get off them, definitely should not go cold turkey. If your adrenals have not "woken up" to produce the steroids in your body such as cortisol and aldosterone, you could end up having an adrenal crisis if they are not replaced.

Fortunately, it's easy to find out if the steroids are causing this by just taking a dose (10mg of prednisone would do) you should see an improvement fairly quickly. The key is not to wait until things worse. This is based on my knowledge, but you can discuss this with your doctor, since I can't give medical advice here.

[sleepless-in-seattle in reply to EdBacon]

Thank you Ed. I did stop prednisone cold turkey based upon medical advice but what you say makes sense to me. I was on 5mg prednisone so I think I'll go back to that for a while and then slowly cut back.

[EdBacon in reply to sleepless-in-seattle]

That's a good idea IMO. My guess is that it will be obvious when the symptoms resolve. There are a few different strategies for slowly getting off the steroids and getting your adrenals working again. You may have to tolerate a certain level of the side effects though as you get off them since your HPA axis has to respond to the need and deprivation provides the stimulation.

[LearnAll]

Stopping steroid drugs such as Prednisone ,Dexamethasone etc is a bad idea. Sudden withdrawal of prednisone leads to anxiety, agitation, irritability and at times mood swings. Prednisone needs to be tapered off. Zytiga can be stopped suddenly.

[Grumpyswife]

Prednisone is so important to my husband that his endocrinologist gave us an emergency prescription of injectable prednisone to use in case of hospitalization. We keep it at the front door with his DNR and health directive papers.

He was told to continue 5 mg daily after stopping abiraterone several months ago. His cortisol was gone.

[EdBacon]

The problem is the long term use of exogenous steroids and the resulting suppression of the HPA axis that controls production of corticosteroids and mineralocorticoids. Here's an article on the subject.

uclahealth.org/endocrine-ce...

[Poowater]

I agree with Tall Allen.

[j-o-h-n in reply to Poowater]

I agree with Poowater.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/15/2022 5:54 PM DST

[Poowater in reply to j-o-h-n]

Thanks John.

[Alice85]

I was on Zytiga.It was not for me.

I did not have adverse effects. when I stopped taking it.

[Hidden]

I am following all of your comments, Oncologist just ordered zytiga for Jim. He is on Lupron now. Thankyou❤️

[Break60]

I don’t recall any withdraws symptoms. Don’t know why there would be any.

[MateoBeach]

You have good advice from many on why a gradual taper off the prednisone is wise. 10-7.5-5-2.5-0. A few days at each, then good. But if symptoms are truly “flu-like” then maybe run a home COVID-19 test to be sure on that possibility.

[Kittenlover50]

Bill came off cold Turkey. No issues, other than storing 27,000 dollars of med in our safe as we had just gotten a 3 mo supply. ( no, we did not pay that much, had very small copay). He had a major leg issue and they didn’t know why, but ended up not the med, but never went back on.. took a vacation as he was non detectable and no evidence of disease

[Kittenlover50 in reply to Kittenlover50]

We tapered the prednisone over bout 10 days. No issues.

[j-o-h-n]

Geezacripe...... what's a little name calling between two old pricks?

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/15/2022 6:57 PM DST

[CAMPSOUPS in reply to j-o-h-n]

Its nothin. My prick rode off in the sunset but.....Oh, that kinda prick.

Well I will make a list of names for name calling for possible future use lol.

[j-o-h-n in reply to CAMPSOUPS]

My first one rode off too......... (There is a God after all)

Names beginning with F not permitted..........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/15/2022 9:54 PM DST

[Hidden]

Thank you Smarty, I am grateful for the input regarding this drug. Karen

[slpdvmmd]

How your adrenal suppression is recovering can be evaluated by cortrosyn stimulation test. There is no guarantee you will have complete adrenal recovery after prolonged suppression.