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Starting Colal-Pred trial this week

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Ulcerative Colitis
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Posted 5/17/2009 5:16 PM (GMT 0)
Went to doctor on Friday for horrible flare that just started this past week. Since Rowasa and Canasa did nothign for my past flare, and I HATE prednisone and will avoid it at all cost, I've decided to go thru with the Colal-Pred trial they are doing here in NC. I go tomorrow for my first screening, and hopfully will have my first dose on Thursday. Of course, I may get the placebo, but I'm really excited about it possibly helping me without the steroid side effects! My doc said I could come off the study whenever I wanted, so if it isn't working in a week or so, I'll pull and start Remicade (I think that's what he said he wanted to try next).

Anyone else have experience with Colal-Pred trials? I was in the screening process about 1 1/2 years ago for it, but amazingly went into remission before I got to try it! It would be nice if that happened again!

Renee
4 Lialda/day
Currently in a flare
Posted 5/17/2009 7:21 PM (GMT 0)

You do realize that this contains prednisone?

  • You will be randomly assigned (like tossing a coin) to one of the following five groups.

    • Group 1: Placebo (sugar pill) - two capsules once daily
    Group 2: COLAL-PRED® equivalent to 40 mg of Prednisolone- two capsules once daily
    Group 3: COLAL-PRED® equivalent to 60 mg of Prednisolone- two capsules once daily
    Group 4: COLAL-PRED® equivalent to 80 mg of Prednisolone- two capsules once daily
    Group 5: COLAL-PRED® equivalent to 120 mg of Prednisolone- two capsules once daily

    Posted 5/18/2009 3:25 PM (GMT 0)
    Yes, I do understand that. But from what I understand is that with the delivery method (breakdown directly into the colon), there are virtually none of the usual Prednisone side effects.
    Posted 5/18/2009 3:26 PM (GMT 0)
    What is this, a variation on entocort?
    Posted 5/18/2009 3:28 PM (GMT 0)

    That is good for those who have side effects - mine were/are minimal.  What about long term effects - that would be my interest especially if I were younger.  I have really had no problems with side effects - of course, I don't like the moonface and slight weight gain but if it is doing its job.  However, this sounds promising - please keep us posted!

    ElaineNY

    Posted 5/18/2009 3:28 PM (GMT 0)
    I believe so, but in pill form instead of rectal.
    Posted 5/18/2009 3:30 PM (GMT 0)

    Info I found....

    http://www.dhmc.org/webpage.cfm?site_id=2&org_id=102&morg_id=0&sec_id=0&gsec_id=46442&item_id=52072

    Posted 6/13/2009 6:19 PM (GMT 0)
    Any update Renee?

    I am currently taking 4 Lialda and 10mg of Pred but I have little to no side effects. I obviously need to get off the Pred even though it is helping me with little/no side effects.

    The doctor is having me go to 5mg of Pred for this week and then none for 2 weeks before I can start the Colal-Pred study. I am more worried about the next 3 weeks than I am the actual study.

    Just curious if you have any results to share with your study.

    Thanks!
    Posted 6/13/2009 10:49 PM (GMT 0)
    to UC in Memphis: Well, things didn't quite go as planned. I truly think that the Colal-Pred was working as you can see from my original posting, and it went on getting gradually better for a couple of days. Then, all heck broke loose. I spiraled into the worst flare I've ever had in my life and ended up curled up in a ball, shivering and vomiting and having bloody D, and mid grade fever. It ended up in a 6 day hospital stay. At the hospital I was diagnosed with C-Diff on top of my colitis, which had not shown up in my initial trial bloodwork, so I had to have picked it up somewhere inbetween. Yesterday I went back to the doc and he tried to put me back in the hospital b/c I still wasn't eating and still having lots of pain. He made me sit in his office and get a bag of fluids in me, which helped, and he changed my antibiotic to Vancocin (super-strong) and it's working already. It's been 2 weeks and today is literally the first day that I've felt human, gone downstairs, ate something, etc. I've lost 20 lbs (and I'm small to begin with). You can see more details in my post "home from the hospital". Thanks for checking in! I think mine was a fluke and that the Colal Pred really will be a great solution.
    Posted 6/13/2009 11:05 PM (GMT 0)

    Wow.  Hate to hear that.  So you are pretty confident it had nothing to do with the Colal-Pred?

    I will check out your other thread.

    Thanks for the reply!

    Posted 6/13/2009 11:55 PM (GMT 0)
    C diff can't be detected in the blood so that's why they wouldn't have detected it. It's only found in stool samples. Sorry you were so sick. C. diff is what started me in this mess with UC. Prior to getting c. diff, I was never sick. It's a horrible thing!
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