Another flare...no clue which change caused it

After my stay in the hospital, things were finally starting to go well for me with the Remicade and Imuran. I was tapering off of the prednisone by 5 mg a week. Then doctor said the Imuran was affecting my liver based on blood tests. So he took me off of Imuran and had me continue tapering the prednisone until I was off of it (I dropped to 5 mg a day of prednisone on same day he pulled me from Imuran).

So, a week after stopping Imuran and when I was off of the steroids, I started to flare. Mild at first, but not full blown. I had blood work on third day of the flare and it all showed things as being normal - nothing indicated it was a flare. But the blood, diarrhea, cramping, urgency to go, number of BM's all says otherwise.

So, I feel the doctor's decision to pull Imuran AND remove the steroids was a bad one. With two variables and no constant, I have no clue what caused the flare. I am guessing it is the removal of the Imuran, as I cannot see 5 mg of the prednisone (or even 10) being that effective considering I was on 60 mg to initially bring the flare from the summer under control.

I am pissed off and depressed, as I had gone 7-8 weeks of no blood and no issues. I felt like a normal person. I had no reservations making plans. I was not carrying Immodium with me everywhere I went. Now I am worried about potentially having to do the surgery sooner (rather than a lot later). I worry about what the next day will be like.

Could it have been the removal of the low dose of prednisone? Or is it more likely the Imuran? Shouldn't the doctor be putting me back on a mesalamine product to help the Remicade since Imuran is gone? Since most of the inflamation seems to be rectal and not from further up the colon, shouldn't we be treating it with medication directly applied there?

Right now, other than my next Remicade dose which is this coming Friday, I am on NOTHING prescribed for my colitis. Awaiting call back from doctor. Things looked better last week so when doctor's office called with lab results, no action was suggested. I called this morning to let them know I had a bad weekend with the flare - hoping we can get something going without going into his office as I have no vacation time left this year!

I feel your frustration!

It could be either drug. If you are steroid dependent my guess is that it is the elimination of prednisone that did it. Often times we just don't know; it might not be related to anything.

Sue

I would avoid more steroids if I were you. Over 4 months is considered long term use and the long term side effects outweigh the benefits. The only way I would continue was if you had to remain stable for surgery, if surgery was your next choice. Hopefully your next remicade treatment will kick in and you'll be on your way to remission.

Well, doctor called me himself. His thoughts were that we needed to get me in to see the surgeon again so that we can pave the way for surgery. I don't fault him completely - I realize that surgery could mean a lot less stress. I also realize that things do go wrong and I could be stuck with the external pouch for the rest of my life @ 26 years old and single. "Oh that, don't you mind that..." is not something I want to have to tell a future partner.

Anyway...

I spoke with him in depth about how it is a shame we haven't had the luxury of being scientific, only changing one variable at a time. He was wanting me to go back on prednisone, starting with 30 mg then doing a taper of 10 mg every two weeks. I am due for my next Remicade infusion this Friday. So, after some discussion, he agreed to me toughing this flare out (since it is not nearly as bad as I have had, not causing issues with sleep yet) through early next week. We'll see if I have any immediate benefits from the Remicade. If so, no prednisone and we'll switch me to every 6 weeks instead of 8 for the Remicade. If no results, then I will go on the prednisone next week. That way we only change one variable, instead of steroid and Remicade both within a few days and not knowing what helped.

I spoke with him about using mesalamine again. He said it had proved itself to be ineffective for me at this point. I guess I am confused though, as I have not been on it with Remicade, so I thought maybe the two combined would help. I guess he feels otherwise.

He said there is no other medication I can try since Imuran causes me liver problems. So either the Remicade works a miracle this weekend...or I go back on the steroids and have surgery early next year when I have vacation time again.

I am open to ANY and ALL suggestions for remedies I can run to the 24 pharmacy or drugstore right now to assist in getting me into remission. I already take a priobiotic and Omega-3 fish oil supplement. I have Benefiber but it seems Metamucil may be better?

Please help get me into remission and save me from prednisone/surgery!