lowest Pred before stopping

[stephwest]

Hi I am down to 7.5 mg Pred going to 5mg for a month, is that the lowest or can you go to 2.5mg then stop?
(does anybody stop, have any of you stopped Pred? for ever!!!)

[renidrag]

Stopped at 5 then zero and yes was off for over 4 years. Most think you should go to 2.5 and then perhaps one. Don't rush it. Went back on then off again.
Dale

[Pete]

I'm holding at 3. After I see my doc in a couple of weeks, I'll either get off mtx or resume the pred taper at -1 mg/month. That would have me off pred in mid-July. I got off about three years ago and was off for 4 months before I had s small flare.

Good luck!!

[Mas78]

Over 2+ years on prednisone I went from 80mg down to either 5 or 7.5, my labs were a little wacky, i believe my red blood cell count tanked, and my rhumy took me off pred and cytoxan. It made me feel horrible for a few weeks as i remember. But i haven't had to take anymore of either of them in the last 13 or so years.

[me2]

Hey, that's sounding good. I have had extremely good luck - and , extremely bad luck. I was off of prednisone for 20 years. Obviously, that is the good luck. The bad luck is I have now been on prednisone for 15 years and counting. I may never be able to get off of it. It sounds like you have at good shot at it- for ever!!!

[annekat]

I've had WG for 4 years and while doing pretty well, haven't gotten lower than 7.5 mg. without having a flare. Everyone is different. I'm now sort of regulating my own pred, with the doc's permission, and since I was recently feeling flarish on 11mg., have been alternating between 15 and 20 mg., with the intention of continuing on some sort of alternating regimen as I taper lower. I have read on here of people having success with alternating dose tapers, like 15mg and 10mg the next, then maybe going to 12mg. alternating with 10mg, or whatnot, and eventually getting off the stuff. Before, I've always just taken the same amount every day, although my doc has suggested alternations at times. We will see how it goes. I wouldn't mind being on a small amount indefinitely, like 2.5mg or 5mg., to help avoid flares, if that's how it works out.

[marta]

Hi I am down to 7.5 mg Pred going to 5mg for a month, is that the lowest or can you go to 2.5mg then stop?
(does anybody stop, have any of you stopped Pred? for ever!!!)

It took me four and a half years to get off the nasty stuff, but I am now officially off as of end of January. I was very conservative with my wean after reading too many stories on here about flares being induced by trying to get off to quickly. My doc was on the same page as me, so that makes things easy - she lets me go based on how I feel, and if some months it was too much, I'd just take my time. The drops for me were .5mg every drop below 7.5mg. It sucked between 8.5 and about 5.5 (where your adrenals feel pressured enough to start producing again) but I am off now and no symptoms since getting off. It sure was a long process, and I can say without any hesitation that I'd much rather be on chemo than on steroids. I am now on Imuran alone and we'll just hang there for a while, but no more pred, and it feels so awesome to be back in my old face (granted it's much more wrinkled - like a balloon that was really really blown up, and has now deflated - can you picture it? )

I promised God, or whoever's in charge that I would love my wrinkles after the pred moon face, so I love each one like a general's stripe... they are my medals of war.

Best of luck, and trust your gut. You can always go up to your last dose if you are finding the drop too hard, get to a point where you don't feel crappy and then try again with a smaller drop. That worked for me on a few occasions. I also used alternating doses (to avoid cutting the pred)

[NicShaf]

Mine was 2.5, then I stopped. I haven't been on Pred since March 2012, started in Dec 2010. I hope to be off Pred forever