More prednisone or Remicade? Help!

I need some opinions...

I started prednisone for a severe flare 2/26/10 @ 60mg/day everything seemed to be progressing smoothly except for a pain on the right side. Initially my doctor thought it was a side effect of the prednisone. It came and went and eventually I asked for a pain killer for it. He gave me vicodin which didn't seem to help much but I kept taking it because it calmed me down. This was after being on pred for almost 5 weeks. At this point I think I was developing severe anxiety and got myself all strung out on vicodin, then percocet. Well, my doctor decided I was having too many side effects from the pred and needed to come down asap. So my taper went like this:

34 days: 60 mg
2 days: 50 mg
3 days: 40 mg
8 days: 30 mg
2 days: 20 mg
5 days: 25 mg (current)

Right around the 40/30 mg mark I started complaining about stomach pain. We assumed I was developing a stomach ulcer. The pain flared up then receded a bit. Last friday was my first day on 25mg and I started having what I thought was a flare up of this stomach ulcer, so I started treating with ulcer drugs and the symptoms got worse. Then I had myself convinced I have pancreatitis. Well, I have neither. It's my colon flaring up all over again!

So, here's where I need some advice. My doctor is talking remicade. I am wondering if it's worth bumping the pred back up to something like 40mg a day to see if things will settle down again and a slower taper will work? I think that my doctor thinks that that right sided pain I was having was not in fact a side effect of the pred but just some inflammation or ulcers the pred wasn't taking care of. At this time the 25mg/day is keeping my BMs OK but I'm having a lot of pain and know that the d will return soon if I don't do something. I have that burning sensation like I did before things firmed up. And honestly, I'm not functional at this pain level.

I had a lot of pred side effects, knee pain, mood problems (am on meds now), eye & ear pain (not much lately both were bad at 60mg), insomnia.

I'm just really hesitant to say prednisone didn't work when even though I'm reflarring having only gotten to 25mg, the beginning of my taper was ridiculous at best and I wonder if I even had a fighting chance to come off it in one piece... I'm also currently on Imuran, but of course that often takes several months to show whether or not it will work so that's the other piece of the puzzle, me wondering if the Imuran would kick in.

Help!

I started Imuran 50mg 3/5, then went to 100mg 3/25, 150mg now for 2 weeks.

I have read about the cancer risk for Imuran and Remicade and will be sure he takes me off the Imuran when/if we try remicade.

I am really trying to get all my vitamins in but I have been really bad about it. My general health is honestly pretty bad right now. I'm going to ask for a full blood panel when I see my doctor tomorrow...

I agree with fruitgirl. Pred has some pretty horrible side effects.

I think I probably am going to ask to do Remicade. The problem is, what do I do in the mean time to not not end up bed ridden? For some reason the blood and mucus haven't come back my whole colon just feels like FIRE. I'm sure the blood and d are soon to follow but the pain is just... well I'm feeling pretty sorry for myself today. So, I suspect we will have to bump the prednisone to get me to a reasonable level of comfort and then, get off the Imuran. Do all the prep and start the remicade... then taper pred again... after the remicade starts... either way it's so depressing.

Jennifer, that definitely is depressing! Anytime you have to contemplate bumping up the prep, it is depressing for sure.

Fruitgirl is right on the hospitalization, from my experience anyway. Not that I would want to be hospitalized again! But I know it was going to be weeks before they could schedule me for my first infusion, then I was admitted to the hospital, and they were able to push everything through so I could get my infusion by week's end. It went from weeks to less than a week because I was in the hospital. And the RemiStart program has my start date early enough that that first infusion in the hospital was covered. They still had to get the approval from our insurance, but they really pushed it through faster.

Of course I was on IV steroids at high doses because of being in the hospital, so it doesn't really eradicate that issue.

So, I have to bump the pred to 40, get scoped (flex and he's going to look in my stomach) and start Remicade. And my insomnia is worse from the Lexipro.

Yeah, that's what the doctor said that basically pred. didn't work for me in terms of being able to use it as a shock to shut down the immune response. I am really sad. It's my first time on pred. This is my first major flare. I am really hoping we can determine I have just UC and not Crohn's because if this is how bad my colitis is and the rate of progression I can't see having my colon for much longer. Even if Remicade works wonderfully that buys me maybe 2-3 years?

It really does sound time for the switch for ya Jen-
TRY NOT TO THINK about the future of your colon...we never know what's coming down the pike with this! Why worry yourself sick over it when
who knows if tomorrow could bring some miracle cure! Your body especially needs it's rest not only because of the flare but because of the prednisone.

Good luck with the switch!

Jennifer,
Please see a psychiatrist and find out if Lexapro is a good mix with Prednisone. From everything I've read and my psychiatrist says, antidepressants and prednisone is a bad mix. Maybe look at low doses of mood stabilizers, get some opinion on them -- Zyprexa, Geodon, Seroquel, Zyprexa helps me with anxiety and depression. I was so anxious I was through the roof.

Ellen, I am actually starting to feel a little better on the Lexipro so I *think* the combo is doing OK for me. It's hard to tell because the Ambien stopped working for me so I have been getting very little sleep. I can see a HUGE difference in my mood on days when I get a nap. So I stopped Ambien last night and used a Xanax to get back to sleep which kinda worked! And I suspect my mood will be better today because Ambien can be kind of a depressant. I am going to keep Lexipro for a couple more weeks to give it a fair shake.

As for the Remicade, I had a sigmoid and endoscopy yesterday. The results were that my stomach, which we thought was causing me pain is fine, looks great in fact! He was only able to see the left colon but he said that looked good too. OK... so maybe it was the quick taper re-flaring my colon then what is causing these other pains? Liver? Spleen? Kidneys? I suspect next week is going to be the week of me peeing in cups and being stabbed a lot with needles to figure out what is actually going on with my body before we proceed. In the mean time, my Imuran dose has been lowered, off the Lialda, pred. back up to 40mg. Bumping the pred to keep the colon from going downhill until we proceeded with Remicade was going to happen on way or another but I think honestly, we're going to find I need to get off the Imuran or take a much lower dose and can't tolerate the amount of Mesalamine in Lialda (I did OK on Asacol) or that I can't do Imuran and Mesalamine together. Anyway, yesterday was the day of more mysteries...

Thanks for the tip, Ellen! I have an appointment with my GP in the AM tomorrow and he is the one managing my mood issues for now so I will definitely ask him to help me with the sleep issue! :o)