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Ulcerative Colitis
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Posted 12/7/2009 9:43 PM (GMT 0)
So I have this big flare up since 3 months and I have taken Prednisone for 3 months (started at 40 mg) and a total of 144 Pred pills (10mg each) and since it didn't do anything, I tapered off and I am off the Pred since Saturday. My flare isn't better at all. So my doc thinks we should have lots of blood work done and lots of stool samples to see whether I have an infection. Pred masks infections and makes infections worse. Okay, here it is. My inflammatory marker are through the roof and I have white blood cells in my stool which points to an infection. So I will take Flagyl and Levaquin for the infection and at the same time, my doc wants me to start up on 40 mg Pred again.

Please explain that to me: Why in the world would I take Pred again when I likely have an infection that I will fight with Flagyl/Levaquin? I said no to the Pred and the nurse seem to be a little pissy about that. I mean ... hello?? I also take 6MP which is worthless when you have infections (obviously).

Am I so dense that I don't understand why I am supposed to take Pred again or what is the deal?

I will see my doc on Thursday. They want to start me on Remicade, they said. Well ... no. I have a huge deductible with the health insurance and no money for that. I already have to lash out 500 bucks a months for meds. And I really don't want to start on the Remicade, it scares me. I don't feel we have tried everything else, like give 6MP a chance when there is no infection and also try Imuran first since I am a low responder to 6MP.

Sheesh, I am so mad right now.

Posted 12/7/2009 10:22 PM (GMT 0)
     Scarlet, I understand your frustration.....been there.  I have suffered with ulcerative proctitis for over eleven years.  Been on prednisone more times than I can count and was becoming prednisone dependent.  It gave me osteoporosis, high blood pressure and this past year...high glucose levels.  The 6MP just wasn't doing the job.

     I threw in the towel and finally listened to my GI doctor after arguing with him for the past two years.  He wanted me on Remicade and all I thought was that he was after the big bucks.  I was scared to death to go on Remicade because I tested positive on the PPD test over 40 yrs ago.  Well, I decided to get retested.....negative results.  I was soooo sick that I told him....let's just do it!  Remicade gave me my life back.  I understand you have good cause for not going on it because of your insurance.  Please leave no stone unturned...perhaps someone in the forum could give you better advice in helping to pay for the Remicade.  By all means...do NOT be afraid of the medication.

     I wish you well.

Posted 12/8/2009 2:37 AM (GMT 0)
When was the 6mp started, before or after the flare? And if before, how long before? Also 6mp and Imuran are similar, I think they do blood tests to figure out which one you're supposed to be on? So you prolly won't try Imuran. I don't know though, I don't remember them doing tests for that for me unless they snuck them in.

I think I might give the antibiotics a go before I went on the Remi.
Posted 12/8/2009 2:24 PM (GMT 0)
I started 6MP a year ago. Well, 6MP and Imuran are not exactly the same. They metabolize differently. You need a certain enzyme to break down 6MP and I don't have enough of that, thus I am a low responder. Imuran might work better. We will see on Thursday when I have talked to my doc.
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