Prednison taper off

[huskie83]

I switched vom Aberateron (Zytiga + 5 gm Prednison) to Enzalutamit (Xtandi). I tried to taper off prednison, which Ihad taken for two years, within 14 days ( 5 days 5 mg and 5 days 2,5 mg). I felt awful afterwards and had to stop taking Xtandi. I now have information, that I should taper off prednison in little 0,5 mg doses for 10 or up to 18 months. I stopped taking Xtandi because I thought I had developed a depression. But it obviously was due to stopping prednison too quickly. Has any one had a similar experience.

I am now waiting until the depression fades out, before I start taking Xtandi again. But Xtandi has a warning about prednison of negative interaction, meaning Xtandi could make prednison ineffective. This could mean, being unable to taper off prednison properly whilst taking Xtandi at the same time. Has anyone had the same problem and found a solution to this?

Huskie - Germany

[Hidden]

Oh the things the doctors conveniently neglect telling us when they pitch their poisonous treatments meant to "extend our lives".

[Concerned-wife]

can you please share where you read about tapering off for such a long period?

[Grandpa4 in reply to Concerned-wife]

a lot depends on how long you have been on it. If you have taken it 2 years or more studies say it takes 6 months or more for the adrenal axis to recover. There is no good reason to rush it. I am a rheumatologist and I have tapered many people off steroids.

[Concerned-wife in reply to Grandpa4]

thank you! My husband still seems to have adrensl issues after going off abi plus prednisone in Nov so fingers crossed .

[huskie83 in reply to Concerned-wife]

I found tapering schedules and warnings at goggle

Prednisone withdrawal symptoms can be quite dangerous, so withdrawal must be undertaken in a safe, measured manner. We’ll talk about the withdrawal process, possible symptoms of prednisone withdrawal, and why you should never take it upon yourself to stop treatment on your own. Abruptly stopping any corticosteroid treatment can be life-threatening. Always follow the medical advice of your healthcare provider when stopping any medication.

[michael00]

Still on zytiga but took 10mg prednisone daily for 3 years. Cut it down to 5mg and I felt crappy for about 2 weeks but it improved after that. The sudden drop from 10 to 5 made me wish I had tapered slower but the main reason was to help control blood sugar. It definitely helped and was worth a couple weeks struggle

[Grandpa4 in reply to michael00]

tapering from 10 to 5 is a different phenomenon. Your body just missed the feeling you get from prednisone. Below 5 you are asking your adrenal gland to produce steroids. If it can’t then you are deficient which can be life threatening.

[joeydashoe]

I was on Zytiga + 5 mg Prednison for 20 months switched to xtandi MO told me no need for Prednison with xtandi . No tapering off just stopped Prednison had no effects.

[6357axbz]

when I tapered of prednisone the taper off period lasted only 2weeks

[PCASURVIVOR]

I took Zytiga and 10 mg of prednisone for 6 months after diagnosis of aggressive PCa. I tapered prednisone for 2 weeks following cessation of Zytiga. BP was erratic for another 2 weeks and had some fatigue. I am now nearly 12 months post SBRT with PSA at .09 and feeling pretty good - strongly active everyday except Sunday.

[dico]

Similar thing happened to my husband. He was told to do a two week taper off the prednisone before he started Xtandi. He felt terrible on 5 mg so the doctor told him to go back to 10mg and then taper more slowly. He did not take her advice though. He stayed stayed at 5mg for a couple more days and then stopped entirely. He thought that he could just suffer a while longer and the effects would go away, and he wanted to start the Xtandi as soon as possible. The effects did not go away, and once he started the Xtandi he became pretty much an invalid; just curled up in a ball and mostly slept. He was totally out of it; he doesn't even remember those days. After 5 weeks he stopped the Xtandi but it took a couple of months to get his strength back. There is no way to tell for sure if the cause was the Xtandi or the prednisone taper, but it all started with the taper.

[treedown]

Everybody told me no need to taper off Prednisone. I tapered off in a week anyway. No real issues. However, I started Xtandi recently and that was more like whatbyour describing. It has not been easy like Lupron and Zytiga were. I have all the SEs on Xtandi and not sure if I will push for a switch to Nubeqa but gonna give it another month. The depression, mood swings, feelings of doom seem to have passed. Recently, like 2 days ago I started taking it at night and I am hopeful it will reduce the brain fog.

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

I just started on Nubeq/a (/= no u) last month with a little dab of Lupron thrown in .....and the only side effect I have so far is learning how to spell Nubeq/a (/= no u).....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/13/2023 6:32 PM DST

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

Thats promising. I wanted it from the get go but the insurance company said no. Hopefully I can prove a case to get switched if Xtandi keeps up these side effects.Glad your doing well on it.

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

John, I just laughed out loud! Thanks my friend…

[huskie83]

Thank you all for your replies. I am new to this forum and I am surprised about so many and quick replies.

[j-o-h-n]

Gern geschehen.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/13/2023 6:35 PM DST

[huskie83 in reply to j-o-h-n]

Thanks John. I tell myself, Tumor ist when you laugh despite. It often works!

Huskie

[Bacana]

Wow that seems a really long time to wait before starting Xtandi? My husband is in the same boat and we are about to begin tapering.

[rsgdmd]

Been on abi 750 mg & 5 mg prednisone since Jan. Abi is failing & MO said to stop abi, continue with 5mg prednisone for a week, then every other day for about 10 days. Today is first day without abi, so will see how it goes.

[treedown]

I have a bottle of Casodex that got lost in the mail and showed up after Xtandi so never been on it. Xtandi is nasty but if it keeps me alive longer I'll have to find a way to deal with it. I would like to try Nubeqa but it is not SOC for where I am at but I may try again. Or I may go back to Zytiga. Mo meeting on MO to discuss. Luckily my PSA dropped after stopping Xtandi 2 weeks ago so I have a little time to decide. I feel a ton better off it though. I also get Lupron jab Wed.

[QuakingAspen]

My husband experienced something similar. After success with Zytiga and prednisone (10 mg daily) for seven years with his PSA rising, his doc took him off Zytiga, tapered Prednisone for two weeks and started Xtandi all at the same time. His energy plummeted, aches and pains all over with muscle weakness, etc. went back on Prednisone after reaching out to an endocrinologist who suggested a far slower taper, conferred with his MO, and stopped Xtandi for 6 weeks. PSA lowered significantly from the short time on Xtandi, but side effects did not go away. Now off Prednisone and on 1/2 dose of Xtandi. Still very fatigued with muscle weakness and intermittent muscle pain, along with a 20 pound weight loss. Had his adrenals checked and all is back on track, scans show no progression cancer, PSA still low at 1.7, all which points to Xtandi as the culprit for his continued side effects, two months out. At his recent visit to his MO he was informed that perhaps his pain is related to a back problem, not the Xtandi, and to reach out to his PCP. We trust his MO, but have learned on this journey that specialists focus on their specialty, and in this case, if the cancer is not spreading and the drug is working in that regard, then symptoms falls into a different domain. We need a captain with medical expertise to navigate the multitude of issues that arise. Now looking into a palliative care doc to do just that.

Best of luck to you huskie83