i am currently tapering off prednisone in anticipation of stage 2 (pouch formation) of 3 stage process. i have been on prednisone for many many years and my GI is afraid i may be dependant on it. i had my ileostomy 8wks ago and was hoping to be off it by now however as i was not feeling too well a few weeks ago my GP advised me to slow it down a bit more. i am on 10mg now and afraid once i get lower i will start feeling the effects. just wondering if anyone has had similar situation? thanks

hi everyone please dont bother responding to my earlier thread... i have found all the info i need on the website. it seems like this is a fairly common thing. my surgeon said to come off 5mg every 4 days, no wonder i was not feeling well!

Deedeeh, even though your second post said not to respond, I just had to.

I have firsthand personal experience with the adverse effects of tapering off the stuff too fast. I had my first surgery (of two) over a year ago, and I am still tapering. I was at 20 mg. per day pre-surgery, and I was tapering 1 mg. per month and did just fine until I got down to 7 mg. per day. Then, one morning I woke up lightheaded, dizzy, and absolutely exhausted. When you get down around 7 mg. per day, that's the critical dose, as my doc explained it to me, because that's about how much your adrenal glands put out on their own, when they're fully functioning, and if your adrenal glands aren't back to normal, you can get extremely tired, lightheaded, etc.

Anyway, if you EVER feel lightheaded, dizzy, fatigued, or you just sense that something isn't right, call your doc immediately and get in for some bloodwork (the basic metabolic profile) to make sure your numbers are okay.

I don't want to sound like I'm lecturing, but I've been there and if I can keep another poucher from going there, I want to be sure to chime in.

Good luck!

P.S. - Surgeons have NO CLUE about Prednisone tapering. My surgeon had me on a fast taper right after my first surgery, and I ended up back in the hospital because my adrenal glands basically tried to shut down! Trust your GI or family doc on this.

hi rudolph
thanks so much for your feedback.
i cannot believe how surgeons can be so remis when it comes to something that is sooo sooo important. i am on 10mg now and my GI said to come down 2.5mg per week.. do you think this is too fast? d

It's been 15 years since I was on Pred long term. Now because of my Crohns related scleritis of the eye I am back on it big time, starting at 80mg for over a month. Now I'm at 40mg. At this stage I never drop more than 10mg and wait 4-5 days to level out. Additionally, I carry the reduced dose (in this case 10mg) with me so if I "hiccup" during the day I can take it to relieve the situation. Then the next morning, I go back to the targeted dose. When I get down to 20 or below, the targeted reductions will drop to 5, 2 1/2, etc. then every other day. I figure I must remain on track, but it's impossible to taper TOO slowly.
Talk about surgeons being idiots about tapering, my retina specialist (opthamologist) acts like the pilot that learned to takeoff the plane, but never learned to land. He had me tapering 80mg-3days, 60mg-3 days, 40mg-3 days, then 20. I crashed. Since, I have taken over the controls.
Dave D.

would you think it is safer to perhaps get to 7.5 then come down 1mg per week? i am hoping to have my jpouch formation in 2-3 months and i thought i would need to be completely off the prednisone by then. also would it be safe to have the surgery immediately after i have come off prednisone or should i wait a while. i am just really anxious to have my surgery as soon as possible but i realise its important in the long term not to rush. would appreciate your thoughts on that? thanks

Prednisone tapers are quite individual. Some folks can taper off fast and not have any problem because their adrenals were not suppressed and kicked in right away when the prednisone was removed from the system. I was a fortunate one who did a fast taper from 80mg to 10mg, then tapered that over 6-8 weeks, but I had only been on prednisone for 6 months.

Also, it is a misunderstanding to assume that you need to be completely off prednisone for the next surgery. If you can safely get down to under 20 mg, then you are doing very good. Even if you can get completely off of it by your next surgery, you will need to receive perioperative steroids unless it has been at least a year since your last dose. This is because even if you have no evidence of adrenal suppression after taper, you can still develop it during the stress of surgery (when cortisol demands rise sharply). If your adrenals are suppressed at this time and you do not get additional hydrocortisone, it could cause vascular collapse and be a life threatening event. So, try not to obsess about needing to come completely off of it before your next surgery.

However, there just really is no way of knowing who had adrenal suppression until it happens. The longer you have been on steroids and the higher the dose, the more likely you will develop adrenal suppression on taper. You can usually rapidly taper to around 10-15 mg because that is the normal physiological level in the body. When you get to that point, you probably should not taper more than 2.5-5 mg per week. If you develop symptoms during taper, you need to backtrack and taper slower.

Jan

jan this may seem like a really stupid question... but i will ask anyway. ha. i was wondering if exercise helps your adrenal glands to kick in? my sister just mentioned to me that exercise obviously gets your adrenalin pumping so would this encourage your adrenal glands to do their thing? sorry?

I had my first surgery while still on prednisone treatment for UC. I know how badly you want off of it, but take it slow. For me it worked best to do one day 10, the next 7.5, then back up to 10 for alternating days until I felt ready to drop to 7.5, and so on until I finally said good-bye to that evil drug. I hope you can get off of it soon.

Oh, woudn't it be so simple to just ramp up your exercise to stimulate cortisol production! Unfortunately, the adrenal glands are made up of the adrenal cortex and the adrenal medulla. Adrenaline comes from the adrenal medulla and is controlled by the sympathetic nervous system, not hormones. Cortisol comes from the adrenal cortex. The adrenal cortex is almost like a separate gland, responding to different triggering events and hormones from the pituitary gland. Only the adrenal cortex is suppressed with use of prednisone.

Jan

thanks jan.. i thought that would be too good to be true. thanks to everyone for the all the advice it is a great help. d

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