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Remicade....here I come.......

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Ulcerative Colitis
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Posted 4/12/2011 1:19 PM (GMT 0)
I have been on the 5ASA's can't take them (gave me kidney disease).  Have been on imuran two separate times, both times I flared, first time when I was tapering off the pred down to 5mg and the second time I was off pred for almost two months (but had been on pred for 3 years for my UC/Kidney diseases).  My liver tests have been high, 6x normal but went down to 2x normal.

I have been flaring for just over a month now (no better no worse than after my the first week of my flare) approx 10 bm's a day w/blood was at 40mg of pred tapered down to 15 then put on 100 mg steriod enema's, put myself at 20mg of pred confirmed w/GI and still on the 100mg steriod enema's for the last two weeks (no change).

I can't take it anymore, I am so sick of being sick!!  Going through the pre-approval process, need to get the TB test and bloodwork (I almost went on remicade a few years ago but then b/c of the massive amounts of pred I was on for my kidneys 60mg my flare went into remission after a few months)  I just don't want to do the pred anymore and it's really not a long term option.

Please wish me luck w/the remicade, I need it!  There is a small possibility that it could help my kidneys as well as that was an response to medication I was taking (sulfasalazine).  I hope so for my sake but I think it would be wonderful if it worked and could also help others w/kidney disease.  I am going to call my kidney Doc and see if he wants to do some extra blood work or anything before I begin so that they can track it.

Take care,

Beth

Posted 4/12/2011 1:55 PM (GMT 0)
Good luck with the Remi Beth. Keep us posted on how you are doing.
Posted 4/12/2011 10:00 PM (GMT 0)
I've been on remicade since July 2009 and it has helped me alot. My colon is healing and my symptoms were helped after a couple infusions. I have a life. I don't like being on it but I was in a constant flare and pred would make it go away and that was it. I'm allergic to all 5 asa's and 6mp. The pred was fine when I was only on it for a month. My gi put me on it before the remicade from june to nov. and I went crazy. I had major mood swings and I gained 50 pounds. I seen then how bad the pred is for you. I am scared being on the remicade but I had no life before it. My only complaint is I'm still very tired. Good luck, I hope the remi works for you. Ask about being pre medicated before the infusion.
Posted 4/13/2011 1:42 PM (GMT 0)
Thanks WIM!! I can't wait to try it!! What medication should I ask for before going on it?

I have put on 25 pounds since being back on pred, my legs are so swollen I feel disgusting.
Posted 4/13/2011 5:45 PM (GMT 0)
I take two extra strength tylenol and hydrocrotisone. I get these right before my infusion. Some people get benedryl instead of the hydrocrotisone. Just ask your doc if they pre medicate you before your infusion. Good luck.
Posted 4/13/2011 5:56 PM (GMT 0)
I've had my second infusion about 3 weeks back and am scheduled for the 3rd infusion next week. So far it's been great. I was on 40 mg pred before the first infusion from there in just 5 weeks now I am down to 2.5 mg and am going to be off pred totally by the end of this week. No colitis symptoms so far even with such drastic taper. I am keeping my fingers crossed. They do give me Tylenol and Benadryl right before Remicade. I didn't have to ask for it. That's the standard procedure.

Good luck with Remicade. I am sure it will help you.
Posted 4/13/2011 6:13 PM (GMT 0)
Thanks SM and WIM, I can't wait now, I just want to start it!!!
Posted 4/14/2011 1:21 AM (GMT 0)
Beth - You'll love it! 3 to 4 hours of sitting in a comfy chair reading, watching a movie, whatever. It was nice to have some "me" time.  :-)   Remicade was the best thing to happen to me and my UC. Sadly, after a year and a half of infusions, I've developed anti-bodies and can no longer take it. But it was great while it lasted! I could tell a major difference after the first treatment! I wish you much luck!
Posted 4/14/2011 3:12 AM (GMT 0)
Definitely keep us posted, Beth. You have been thru so much with vile complications and certainly deserve a lucky break. Here's hoping that Remicade brings you speedy and long-lasting relief. Peety wrote us a while back that she could eat a cupcake with 2 inches of frosting thanks to her Remi treatment-- so I wish you equally good results. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 4/14/2011 7:37 AM (GMT 0)
Well remicade did not work for me. So now I'm looking at surgery for last option. I will pray it works for u. God bless
Posted 4/14/2011 12:24 PM (GMT 0)
Beth -- good luck -- I truly hope it works for you and helps you out a lot.
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