Question about staying on Pred

It does seem like you should be able to stay on Pred until the Humira can kick in. 30 mg is kind of high long term. Can you taper a little lower? My cousin has Scleroderma and she has remained on Prednisone for the past ten years, but at about 10 mg.. With her Scleroderma affecting her internal organs, she only had a life expectancy of about 5 years and she's still going strong....she doesn't worry about brittle bones and such...just trying to stay alive, but still, she has taken Pred for 10 years, which is my point. I hope that helps. There are a lot of folks here who have taken Pred for over 6 months....I'm a crazy person on Pred, so it's hard for me to imagine it. See what your doc thinks...you know your body.

I would just listen to your body. After being on a sloops taper for a few months I notice weight gain, acne, moon face, and my bones start to ache. It is the achy bones that scares me knowing that pred can cause osteoporosis.

I would try to stay on a high dose until ulyou start the Humira. That was the ticket for me. I started Humira at 20 mg, tapered after the loading dose, and was in remission for 3 years. Good luck!

@Myrne - Hmm. I'm noticing the weight gain all right, but let's face it, I'm also eating a lot more than I was, so I doubt I can wholly blame the Pred - partly though :p The prospect of osteoporosis would scare me too.

@zoso - Yeah, Pred has done similar things for me.

Anyway, the answer seems to be wait until the Humira has kicked in before trying to taper off, so I will do that <_<. Of course if it follows anything like the same pattern as Remicade, the only place Humira will be kicking me into is hospital; oh I'm such an optimist... :-/

I have been on pred for almost a year now, it seems as soon as I start reducing it, the symptoms return. My personal view is that I take it because it makes me feel better. I don't care what happens in 10 years, I want to feel good each day I wake up. So I take it.

@kazbern: I know, you are probably right, but I really am sick of feeling sick. And with a full time job which I cannot afford to quit and a family to take care of, I have to stand on my feet everyday and fight. And I can't do that if I'm nauseous or going to the bathroom 20 times a day...
Anyway, my GI knows about it, he wants to put me on Humira or something like that, but I don't want to take these type of medicines. Just my personal choice, which of course comes with the risks...

I stayed on pred 40 for a month, then went down to 30 mg and stayed there for 3 months. I believe that this was a mistake as my GI belongs to the old school. I kept tapering off and relapsing for one year and a half. Meanwhile, I tried azathioprine, imuran, methotrexate to withdraw pred but w/o any avail. It was only Entocort that enabled me to get rid of pred.
Def when I was on pred I ate whatever I wanted. I gained 14 kgs. But it threw me into a severe stomach flare up and had to stay on iv fluids and injections for two weeks. I also got reversable hypertension (when I was on pred it jumped to 160/100) but my blood pressure has now become either (120/80 or 130/80). I was told I won't be medicated but thanks to pred as it has put me on the verge of hypertension. There are fat collections as well which my GI said I won't lose.
I totally agree w Kazbern that you could try budesonide. I have been on it for a year now and my GI intends to keep me on it for years. I know that eventually it will have the same side effects brought about pred but I literally have no other option.
So, do not taper off until the humira kicks in.

Wow, in different ways, it seems like the both of you have been through the mill with Pred :-/

I suppose that's the only way in which I count myself lucky, although it's an odd sort of luck: not (so far) getting bad side-effects from Pred. However, I have no idea what would happen if I stayed on it for a year or longer - apart from this time, I've always tapered off it fairly quickly.

@scifigal - Budesonide works mainly in the terminal ileum and ascending colon - the right side of the body in effect. So it won't do much good left-sided colitis. But still, may be worth a try in your case anyway. You could also consider budesonide enemas, which would deal with left-sided colitis. I, too, have colitis all the way round, although I think it's worse on the right side than the left.