Phasing down prednisone : Finishing my... - Advanced Prostate...

Advanced Prostate Cancer

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Phasing down prednisone

Atdabeach profile image
32 Replies

Finishing my 2 years on Abiraterone (yay!) in mid-July. My doc said to phase down my prednisone, but wasn't very specific, just not to stop all at once. I'll have a week's worth of 5mg prednisone tablets left when the abi runs out, so I could just do half-doses for two weeks, but wondering what y'all think. TIA!

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Atdabeach profile image
Atdabeach
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32 Replies
Tall_Allen profile image
Tall_Allen

slower is better.

Atdabeach profile image
Atdabeach in reply toTall_Allen

Ok, so how slow?

Tall_Allen profile image
Tall_Allen in reply toAtdabeach

½ dose everyday for a week, ½ dose every other day for a week, ½ dose every 3 days...

Atdabeach profile image
Atdabeach in reply toTall_Allen

Thanks, I like that plan. I can spread my remaining doses over 24 days, if my math is right. I could always get more, but I'm thinking that should be sufficient

MJCA profile image
MJCA

Follow Tall_Allen’s advice. Over 40 years I contracted UC. Part of my treatment was 30mg of prednisone. I was NOT weaned off. I just stopped taking the medication. I thought I was going crazy. Not a good time.

mrscruffy profile image
mrscruffy

I was given a choice and after 7 1/2 years opted for just stopping. Things went fine but hey I am just one person

jedimister profile image
jedimister

Obviously you need to do what your doctor says, and you shouldn’t have to guess. But 5mg of prednisone is nothing so I can’t imagine it’s that big a deal.

spencoid2 profile image
spencoid2

also watch for signs of still needing prednisone like edema or allergic reactions.

Doctorsceptic profile image
Doctorsceptic

Reduction needs to be done carefully and gradually. The adrenal gland needs to be given time to “wake up” otherwise you can have an adrenal crisis due to lack of cortisol (basically metabolic and cardiovascular collapse).

I don’t know what dose you are on. Let’s say you have been on 20mg/day for some months. Then reducing at 2.5mg every three weeks down to 10mg would be reasonable but keep a check on sense of well being, monitor BP couple of times per week and if feeling “unwell” report to doctor. After that reduce by 1mg steps - it is arbitrary, but to be on safe side let’s say every fortnight.

When you reach 6 to 7mg you will be getting roughly the same dose as your body would normally make each day. Below this the adrenal gland starts to wake up and an “alternate day” regime is good. Again to be on safe side reduce to 6 and 5 mg alternate days (AD) for a week, then 6 and 4mg, 6 and3mg etc down to 6mg AD. If all well then cut the6mg by 1 mg each week.

Suggest you write out a table to follow.

Even when you are off the prednisone, should you fall ill for any reason you might need some prednisone cover for a short while. Your doctor would decide.

This is a very conservative regime. Hope this helps and do discuss with your doctor.

Alturia profile image
Alturia in reply toDoctorsceptic

The OP stated that he is on 5mg of Prednisone not 20mg.

InqPers profile image
InqPers in reply toDoctorsceptic

Hi there. The most gradual the better in my opinion. I was in your position with 24 mos ADT+Abiraterone+10mg Prednisone daily. I tapered off over 3 weeks and I think 6-8 weeks would have been better. My main issue was a lot of joint stiffness and perhaps edema, but I think my lymphedema may have been more to do with my radiation treatments.

Anyway, the joint stiffness was severe enough that I consulted with a Rheumatologist who ruled out Rhumatoid arthritis, or some other auto-immune issue (thankfully!). She did say that it can take 6-12 months for your body to completely regen its own cortisol production. It's been about 9 months for me, and I'm starting to see some good improvement over the last couple of months. As mentioned, everyone is unique!

Doctorsceptic profile image
Doctorsceptic

Small dose. Sorry I did not realise.

As he will have been on it quite a while I suggest alternate day reduction as even 5mg long term will cause some adrenal suppression.

So go 5/4 alt days for a week, then 5/3 down to 5/0mg which will take a month. If all well then gradually reduce the remaining 5mg by 1 mg a week at a time.

Again be aware that if he has a significant medical event he will still have a small risk of adrenal insufficiency for a few months and may need prednisone cover.

Doctorsceptic profile image
Doctorsceptic

By the way I should add I am a retired rheumatologist and was very familar with the problems of steroid withdrawal.

Key thing is to ensure that his doc knows the plan!

Hotrod65 profile image
Hotrod65

It should be a very gradual weaning off with no timetable, I'm Adrenal insufficient due to long term treatment with PD1 immune Checkpoint inhibitors,for stage 4 PC that damaged my ability to produce Cortisol, only 5 mg daily, I may be on it for life now, every little bit helps so my Endocrinologist is ok to try 4 mg daily for quite some time and see where this goes, i will always need to carry my injection of dexa for emergency situation.

Doggedness profile image
Doggedness

my husband went off prednisone over a 4-5 week period but has now got aches and pains in his joints so he wonders if he should have taken longer. It is as though the prednisone masked arthritis and now that he is off prednisone, the arthritis is playing havoc. He is still glad to be off the Abiraterone and prednisone for a while (gave him terrible indigestion but I feel like it has given him years of life). He was on the Zytiga & prednisone combo for 5 years.

Kinggip2 profile image
Kinggip2 in reply toDoggedness

interesting! My husband was on zytiga and 5 mg prednisone for three years. He has had no evidence of disease now for three years, but he has horrible arthritis pain. Also told prednisone could have been masking pain. Retired may 2023 at 70. Favorite and only hobby is golf. Can’t golf. Searching for relief. Had shots, didn’t work, pt, didn’t work. Chiro worked for day or two. Pain doc now looking at burning nerves? So glad his stage -4 prostate cancer is in remission. Wish the arthritis was. I’m thinking he should get the 5 mg prednisone again.

westobutch123 profile image
westobutch123 in reply toKinggip2

Masked also (2 yrs on prednisone) but still golfing 3 days a week with the buddies. Just not as well...;(

westobutch123 profile image
westobutch123 in reply toDoggedness

My arthritis was masked also.

Scout4answers profile image
Scout4answers

My MO prescribed 1MG pills and it was then easy to ease out of it sloooowly.

KaChava profile image
KaChava

I was on 5mg of Prednisone (with Abiraterone) for 2 years and completed all therapies in March. My medical oncologist told me to stop taking it once I finished the bottle. He said that the dose was so small that he didn’t think I would have any side effects stopping. Which he was right. I guess it’s different for different people.

85236442968 profile image
85236442968

Atdabeach and all

Great conversation.

rfgh20 profile image
rfgh20

TA sounds more accurate than my 2 oncologist. They said stop without a taper. I think taper is better

Atdabeach profile image
Atdabeach

Wow, everyone, quite a discussion kept going while I slept! I think I'm satisfied with my plan now, and can't wait to start once my Abi runs out in 23 days (but who's counting?)!For what it's worth, my understanding is that the reason for a gradual phasedown isn't so much to address prednisone withdrawal (at such a low dose), but to give the adrenals time to wake up after being suppressed by abi for so long. The need for prednisone with abi is to replace the natural steroid that the adrenals would have been producing (along with some testosterone) before abi shut them down. Or at least that's my fuzzy layman's grasp of the situation.

Thanks again to all!

MomOfMaisy profile image
MomOfMaisy in reply toAtdabeach

Yes, the Cortisol.

jmarsh profile image
jmarsh

Stick with Allen on this. My doc wasn't specific either and I experienced high BP and headache because taper was too fast.

treedown profile image
treedown

Like all things we arr all different. My doc said to just stop after 2 years. I tapered over a week anyway and no issues I was aware of.

Seasid profile image
Seasid in reply totreedown

You are very lucky.

Sagewiz profile image
Sagewiz

My wife had severe prednisone withdrawals some years ago and she was told to reduce it by 10%/month. Some people have horrible withdrawals, others have no problem, but yes, take it slowly.

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

Just before you run out of Abiraterone..... take a few of them and scotch tape a string to each one. This way you can use one many times by swallowing it and pulling it back up for further use another day. As the French say "Easy Peasy".....

Good Luck, Good Health and Good Humor.

j-o-h-n

Tommyj2 profile image
Tommyj2 in reply toj-o-h-n

very helpful John ….thank you. Could save a LOT of money doing this with Zytiga.

Still_in_shock profile image
Still_in_shock

I did the weaning, pretty much as TA mentioned. 3 weeks.

Still had just over a week after that where my adrenals did not fully restart.

I was so tired, for a week or so. No other symptoms.

After that I was fine. I knew because my blood glucose would climb after getting out of bed. Called "Foot to Floor Phenomenon"" caused by corticosteroids. I knew my adrenals started up again. I did not have that on Zytiga, until I took my steroids at breakfast.

All said and done, I could have slowed down even more. So yeah, take it real slow.

garyjp9 profile image
garyjp9

I also did the weaning slowly but have found myself in that small minority of men for whom the cortisol has not come back. I hit a brick wall of fatigue when I reached Prednisone 2mg (starting out at 5mg), then went back to 3mg for a week, then 3/2, then retried at 2mg with the same results. Have been on 15mg of hydrocortisone for a year now, and the cortisol level has not budged. The long duration of corticosteroids has caused me a lot of problems, but I am told that is the only effective treatment.

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