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Important Remicade Question

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Ulcerative Colitis
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Posted 12/30/2009 5:00 PM (GMT 0)
Hello all, In between my 3rd loading dose and my 4th infusion I've developed a few flares and my GI wants me upped to 10mg/kilo on the Remi. My concern is that I'm already on 15mg Prednisone & 250mg Imuran daily and she wants mr to start a 2 month course of Bactrim. She's a little concerned about my risk for infections and so am I!

I was wondering if any of you guys were on the same course of treatment and if you had any issues to report!
Posted 12/30/2009 9:05 PM (GMT 0)
Would you like to come and post this on the Crohn's forum, too?

Perhaps someone there will be able to answer your question.

Ivy.
Posted 12/30/2009 9:29 PM (GMT 0)
Thanks Ivy, I did.
Posted 12/30/2009 10:02 PM (GMT 0)
That's a pretty intense regimen of immunosuppressants, and anti-microbial prophylaxis is certainly warranted. How long have you been on Imuran? Has a white blood cell count been conducted recently?
Posted 12/30/2009 10:21 PM (GMT 0)
Been on the Imuran and Prednisone since I was first diagnosed six years ago and was pretty effective until I broke into an on and off again year flare. My blood work is very good considering all the immuno suppressants I'm on.

The good news is she wants to take down the pred 2.5 a week and hopefully be off the Imuran in 6 months. I'm just very worried to be attempting this at the height off cold & flu season!
Posted 12/30/2009 10:39 PM (GMT 0)
You've been on pred for 6 years? Wow. So is the doctor hoping that the Remi will eventually replace the Imuran and you'll hopefully be pred free? That would be great.

My next infusion (1 year) and doctor visit is next week and I believe my Imuran is going to be reduced. I would love to cut it out all together eventually.

Keep your hand sanitizer ready through the cold months!
Posted 12/30/2009 10:46 PM (GMT 0)
Everything sounds good. It'll certainly be nice to wean off of the prednisone.

As a note of reassurance, Bactrim is commonly prescribed as a prophylactic measure for late-stage AIDS patients, transplant recipients and recipients of chemotherapy. I'd venture to say that it'll be more than sufficient in your case.
Posted 12/30/2009 11:24 PM (GMT 0)
It's tough, being in that position- when I started Remicade, I was still on about 30 mgs pred. By the time I was off the pred, my Imuran had been upped to 150mgs/day & I had to bump up the Remicade to the 10mgs/kg dose, every 6 weeks. I was scared to death, especially since I had already contracted a nasty strep pneumonia infection which put me in ICU for a week, with a bunch of other infections going on. But..... after I got well from the pneumonia/infections, I just stayed the course with the high doses of immunesuppressants. I figured the benefit outweighed the possible risk, though I did become super vigilant about my health. At the first sign of chest congestion, I was off to my PCP. This happened twice, with both times being the resurgence of pneumonia, but we caught it so early & I started antibiotics right away, so it never developed into a full-blown infection. I don't know... maybe I've compromised my health too much, but on the other hand, being stuck on steroids & still flaring was doing me no good either! I would say that if your blood work is fine & you feel alright, try not to sweat it. If you're entirely opposed to the meds though, don't feel pressured into taking them. These are the times when surgery looks good to me!
Posted 12/31/2009 12:27 AM (GMT 0)
     My doctor took me off the 6MP two weeks before starting Remicade.  He said he doesn't like his patients being on both.  My white count is very good, 5.1.  It was down to 1.6 while on 100 mgm of 6MP and I felt like crap and it still didn't keep my ulcerative proctitis from flaring.  He decreased the 6MP to 50 mgm at the end of the summer and then took me off it completely.  I was on it for seven years.  I have my third infusion of Remicade tomorrow morning and am scheduled for a chest xray next week.  Doc wants to keep tabs on that because I had a positive PPD test back in 67 but before starting the Remicade the PPD test was negative...go figure.  I am down to 2.5 mgm of prednisone and feel sooooo much better!
Posted 12/31/2009 12:36 AM (GMT 0)
This is a new GI and she's an expert in the field and I trust her, she's not one to mince words, and she doesn't gig & gag. She told me if I don't start seeing some positive results soon, we will begin discussing surgery!

Eva Lou, I am so vigilant with my health you wouldn't believe it. I have a jumbo sized hand sanitizer in every room ;) You are right as well as I am still flaring so the benes way outweigh the risks.

Thanks to everyone for your positive feedback, it has helped me to unwind a bit and have a more positive outlook on the future.

On another note for a number of reasons she thinks I may have Ileocolitis - a combo of both Crohn's & Colitis. Unfrigginreal!

Thanks, again everyone!
Posted 12/31/2009 12:42 AM (GMT 0)
Christine1946, I just checked my WBC and it says I'm 5.39. Considering everything I'm on that's good right? I'm really glad you're almost totally off the pred!
Posted 12/31/2009 12:44 AM (GMT 0)
     Fes...I see you are on Fosamax.  You have any side effects from it?  My GI doctor brought it up at my visit on Monday because I have osteoporosis but the Fosamax gave me terrible heartburn.  That was about five years ago when I only had osteopenia.  Now it is full blown osteoporosis...thanks to prednisone.  I believe me GI doctor, at the moment, is just as concerned about the osteoporosis as he is my ulcerative proctitis.
Posted 12/31/2009 12:51 AM (GMT 0)
I had the same problem and have actually stopped it. I forgot to take it out of my sig. I've been taking 1600 mg of vitamin D w/calcium and a multi vitamin daily. I too have Osteo issues and that is why she wants me of the pred by the middle of Feb.
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