Stopping Prednisone: What’s a good... - Advanced Prostate...

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Stopping Prednisone

6357axbz profile image
25 Replies

What’s a good taper off schedule after taking 5mg prednisone daily for 7 months?

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6357axbz
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25 Replies
Fairwind profile image
Fairwind

5mg is a very low dose..You could do one every other day for a week then just stop...Or do whatever your doctor recommends..

6357axbz profile image
6357axbz in reply toFairwind

Thanks Fairwind

TEBozo profile image
TEBozo in reply toFairwind

Yes, thanks. I will have been on it for 1 year come August 2020. That's when I'm off Zytiga and Lupron !😊

jdm3 profile image
jdm3

I did (doctor recommended) one every other day for a week... then one half every other day for a week... then one half every three days for two weeks. It was fine, but seemed longer and more drawn out than necessary.

6357axbz profile image
6357axbz in reply tojdm3

Thanks jdm

Jrb70 profile image
Jrb70

My husband was on prednisone 5 mg for about 16 mo and his adrenal glands shut down. He then had to see his Endo to stop prednisone and replace with hydrocortisone to hopefully ”wake up” adrenals again but no such luck. He now takes hydrocortisone as a substitute for adrenal function for life. Based on his unfortunate experience I would not simply stop prednisone without your Dr or Endo and labs to make sure all is good before taper.

6357axbz profile image
6357axbz in reply toJrb70

Thank-you. Sorry to hear of your husbands unfortunate experience

SeosamhM profile image
SeosamhM in reply toJrb70

Thanks, Jrb70....great information from a lousy experience... Were there any signs/symptoms that your husband had that we should be aware of....?

Jrb70 profile image
Jrb70 in reply toSeosamhM

Yes, he complained about hypotension for months that gradually worsened because he had always been physically active, worked out regularly in gym, walked,etc. and the sudden dizziness had really begun to impact his activities. Often, he would nearly pass out with absolutely no warning while walking somewhere. He had not faced any major symptoms in the 10 years of going through a multitude of therapies for his adv.PC. and at age 76, we started to think that this was the bad part of cancer he had never had to deal with before. Our Onchologist and Internist said that the Zytiga he was on for 16 mos., then Xtandi he was still on at that time for 4 mos.,often caused hypotension and to be careful getting up ,sleep with upper body on incline,etc. None of the many labs or scans had given them reason to thank otherwise and many cancer patients took 5mg prednisone 2 times daily. Nevertheless his hypotension and increased fatigue symptoms now occured on a daily basis so we went to the cardiologist but tests and a monitor revealed nothing. It wasn't until my husband was getting ready to get off Xtandi and prepare for chemo that his Internist ran an adrenal function test and it was unbelievably low, so low that he had to go to an Endo prior to avoid significant health risk going off of the prednisone. The Endo said that 5mg of prednisone 2 times daily over a long time period should be followed closely with adrenal function labs to make sure no problems start to crop up. She spent many months using hydrocortisone at varied doses to try to force his adrenals to "wake up" again. In the end, he had waited too long, and his adrenals were permanently shut down.

SeosamhM profile image
SeosamhM in reply toJrb70

"Lovely," he said in a tone that indicated it was anything but lovely....

Thanks for the excellent detail, Jrb, and for alerting us to another potential complication! Best of luck to you both on this journey!

Jrb70 profile image
Jrb70 in reply toSeosamhM

Thank you. Good luck to you!

Bluebird11 profile image
Bluebird11

I don't think anyone can say how someone will react tapering off a steroid. I would say take the safe route by doing it more slowly than you might think.

We tapered but would cut the pill and keep making it a lower dose.. doing the lower dose for 3 days and then the next lower dose 3 days and finally when we got to 1/8 th we put one whole pill in a 2 oz homeopathic remedy, some use water.. and shake and take then drops in the morning and evening until he had completely weaned..

I know this is our own recipe for weaning- although it was advised by one of our doctors.

I've known people who can get off steroids with no problem ... and I've known some who need very slow weaning.. I hope this helps..

6357axbz profile image
6357axbz in reply toBluebird11

Thanks

larry_dammit profile image
larry_dammit

My dad was on it for a year, the doctor told mom to just go every other day for a week, Wrong. Had terrible DTs. I would recommend. 1/2 a day for a couple of weeks then see how that’s going, if well then 1/2 every other day for a week if ok. Then to quit. Your system will know what works for you be prepared for no appetite and very edgy. Get a case of ensure so you don’t start losing weight.

6357axbz profile image
6357axbz in reply tolarry_dammit

Thank-you

jedgar1 profile image
jedgar1

I am coming off two years of Zytiga Lupron and prednisone 5 mg my doctor at Dana Farber told me last week to take the prednisone 5 mg every other day for a week and then stop

6357axbz profile image
6357axbz in reply tojedgar1

Thanks, seems like the simplest doc recommended approach thus far

TEBozo profile image
TEBozo in reply tojedgar1

Keep us all posted on your progress please? It will help many of us!

pinejogave profile image
pinejogave

I get my second round of Jevneta next week I am tolerating it well no issues other than occasional diarrhea.I decided against taking the two 5mg a day prednisone prescribed.Is their a down side to my decision?

efsculpt profile image
efsculpt

I am 5 months into prednisone withdrawal syndrome, edema below waist, muscle strength loss, stamina loss.

Went off two years of 10mg/day prednisone in two weeks. No good. Went back on 10mg, then reduced for 6 weeks. At 10 mg symptoms dissappeared. Came back below 10mgs. My cardiologist( he had same problem when on prednisone) said should have gone off 1mg a month. I am a bit better than 5 months ago. I plan to wait it out.

I think it's an individual thing. See how it goes. If you have symptoms, go back, do a slower withdrawal, etc.

Until recently I was on 5mg twice per day. Per oncologist I am now tapering off.....3 weeks of 5 mg once per day, 3 weeks of 2.5 per day and 3 weeks of 2.5 every other day.

6357axbz profile image
6357axbz in reply to

Thanks, sounds like a good plan

MateoBeach profile image
MateoBeach

Some form and period of every-other-day dosing (once you are tapered down to 5mg/day) is helpful in that on the off days when you are actually deficient in corticosteroids will stimulate ACTH release from the pituitary. This gives a hormonal stimulus to the adrenals to activate the production of natural cortisol once again. Whereas, on long term steroid use (prednisone or dexamthazone) this has been in deep "hibernation". The ACTH is needed to bring it back on-line.

26golf profile image
26golf

I was on Lupron, Yonsa [like Zytiga but I didn't have to take after meals] and 8 mg of methylprednisolone for 10 months. I decided to DC the Yonsa and Methylpredniolone. I went from 8 Mg. for a week to 6Mg. for a week then 4 then 2. Before stopping I got a cortisol level to judge adrenal function. It was .8 on 8 mg. At 2 mg. I had another cortisol level. It was then 12.0 which is normal and I stopped. By the way 8 mg of Methylprednisolone is equal to 10 mg. of Prednisone.

j-o-h-n profile image
j-o-h-n

Good ole..... six of one or half a dozen of the other..... (trust your doc, if he fouls up, don't give him that bottle of wine for Christmas, drink it yourself)...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 12/08/2019 9:53 PM EST

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