Prednisone tapering?

Hi, y'all- I've been a lurker for a while, and have been blessed by all your info and suggestions, so...thank you v-e-r-y much!!

I've been on prednisone since April, and can't take it any more!! We're waiting for Remicade, and another colonoscopy at this point, but I'm hoping for advice on tapering the dreaded (and hated) prednisone. The side effects...*sigh*. So for 3 months I took 100 mg. a day of the stuff, and I've gotten it down to 60 mg QD. Now the signs of adrenal insufficiency are coming into play. I have 10 mg tablets, which I break in half, and drop one half per week, but as slow as that seems to me, I still have symptoms. Oh- and I'm super impatient, and just want this to be over! (I know- it probably can't be like that.)

Does anyone have experience, or suggestions? Maybe it's going to be ugly anyway and I should speed it up? Maybe 10 mg a week rather than 5? I've read that at 60 mg a day you can safely drop 10 mg every other day, but I'm reluctant. Is it true the lower you get the slower it needs to be? Doc is not on board fully with this program, but he just says 10 mg QOD. (every other day)

Thanks so much. I really appreciate the time, and the care you all take of one another. <3

*I just put a title to your post.

Post Edited By Moderator (Red_34) : 11/22/2011 5:44:03 AM (GMT-7)

Wow, you are a high dose, you must have had one heck of a flare! As bad as prednisone is, if you taper too fast your symptoms will come back with a vengeance. I was told 10mg a less when I started at 40mg but then couldn't get lower than 20mg for a while, that seems to be common. Maybe try 10mg a week then slow it down as you get lower. I ended up doing 2.5 less(breaking 5mg in half) every 5 days or so when I was stuck at 20mg and finally getting better and that worked well, though my doc wanted to me to just do 5 mg less a week. I know when I finally, finally got to 5mg my doc did say to do 2.5 a week until I was done..I truly hope you get there soon! I wanted to have a party and celebrate when I got off pred, I am sure you will want to as well!

Yes I agree, that seems like too much for too long and to high. Just get a second opinion

Thank you for titling the post! My brain is shot! lol

Right now, for the UC, I'm also taking 14 .375mg Apriso caps, and a good probiotic. And of course, Diflucan for the thrush that develops due to the prednisone. (argh) The high dose of pred was supposed to eliminate the bleeding, which is pretty severe, (anemia now!) but it really never did. When the doc bumped the Apriso from 6 a day to 14 a day it helped a little, but the bleeding is still there, and lowering the pred dose has no effect positively or negatively, so I can't see a reason to stay on it. If I notice an increase in bleeding during the taper, I will, naturally, stop.
I take other meds for Fibromyalgia,(Lyrica, opioid, clonazepam at night) which I also hate. That began about 16 years ago, and the UC symptoms 7 years ago. Doc says it's all one autoimmune disease. Lost my hair at 45, which was a bummer. Oh- and I have no health insurance, so my PCP, who has been a friend for over 25 years, hooked me up with the local tertiary care hospital's clinic. There's an excellent GI guy there, but he can be hard to get to. My primary calls him about once a week, though, so his input is there.
Bill (PCP) also calls a GI guy north of us, and another local guy when he gets stuck. It was the GI guys' idea to use so much prednisone...it always has worked in the past, hence another colonoscopy to look around for reasons. I think it's really just butt covering before we start Remicade. Now THAT terrifies me! The side effects are fairly scary, but as Bill says, we can't just let you bleed to death. I suppose. ;)

So, as far as a second opinion, I have three gastroenterologists (I have actually seen only two) who agree on the whole prednisone thing, thinking it would be a stop gap till the Remicade can be started, and that's supposed to be some magic bullet. But from what I read here, I'm not so sure.

I've modified diet (SCD, no dairy, gluten free, etc.) to little avail. But thanks so much for the tapering input. I thought it was a bit too fast. Unfortunately, the symptoms of adrenal insufficiency and anemia are really similar, so it can be hard to tell the difference.

You guys are awesome- I appreciate the input more than I can say. ~Ellie