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Remicade failing?

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Ulcerative Colitis
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Posted 4/26/2011 3:44 PM (GMT 0)
So here is the situation, i have had three doses of remicade so far, after the first two i felt amazing, bleeding and pain fully stopped, fully formed bm's, figured remicade was working as a miracle drug for me...Then following my third infusion even about a week or two after i wasnt feeling so great, bms were loosening and i was occasionally seeing blood. It has now been 5 weeks since my third infusion and i am bleeding pretty significantly, going about 5-10 times a day and pain is back. Im really worried that remicade has failed for me already. I am however going through lots of stress with exams at school, so basically im just wondering is there still hope that remicade will work for me at the next infusion? or am i done with it already?
Posted 4/26/2011 4:12 PM (GMT 0)
Hi Chris. The same thing happened to me. Two days after my first infusion, the blood was gone and I was so excited! I got my second infusion and 19 days after, all my symptoms came back. I got my third infusion and nothing improved. Now I'm getting surgery. I know I talked to you on here when u were in the hospital and was all for Remicade. Sorry, it seems it might have failed you too :(
Posted 4/26/2011 8:14 PM (GMT 0)
Hang in there Chris. You might just need a higher dose, or maybe more frequent infusions (every 6 weeks instead of every 8). I have had a very similar story to yours, and I just had a 10mg/kg dose a couple of weeks ago. It is still not perfect, but it is better than before. I have to see how long it lasts. With my first 3 doses, it only lasted 10-14 days for me. I am now on day 12 of the 10mg/kg dose.

Check with your Dr. He may put you up to a 6 week schedule.
Posted 4/26/2011 8:19 PM (GMT 0)
I agree with mom2panda, there are things the doctor can try like a higher dose or making the infusions closer. I don't know if I feel like Remicade is a long term solution for everyone in reality. It seems like many people respond well to it for a period of time and then stop responding :( I hope this isn't the case for you.

Has your GI mentioned trying Humira? Some people who fail Remicade do well on Humira. I've also heard you're less likely to build up antibodies to these meds if you're also on 6mp or Imuran but in my opinion, being on all these drugs can be dangerous.
Posted 4/26/2011 9:54 PM (GMT 0)
Same thing happened to me. Felt great for the first three infusions. Then all of the sudden things got real bad real fast. I had another colonoscopy and it showed the disease had SPREAD. My inflammation is all the way up to my transverse colon now. I am currently trying Humira. If Humira doesn't work, it's surgery for me. I hope things get better for you.
Posted 4/26/2011 9:57 PM (GMT 0)
Botwis1 - how is the Humira going for you? Humira is not approved for UC in Ontario, so I don't even think I can get it if I need it. :(
Posted 4/26/2011 10:10 PM (GMT 0)
I don't know if Humira is approved for UC here either but I have heard of GIs changing the diagnosis or writing a letter to the insurance company to get it covered for patients.
Posted 4/26/2011 10:13 PM (GMT 0)
I have heard of that too, but my private insurance is maxed out, and I am under the provincial program and I "think" they are more strict than the private insurance. We'll see. I am not there yet. Thanks for the info though.
Posted 4/26/2011 11:01 PM (GMT 0)
I've only had one dose of the Humira so far, my second dose is this Friday. I am still on 30mg of prednisone, so I can't tell if the Humira is working yet or if it's just the prednisone. I'm going to start tapering the prednisone after my next appointment (May 5th) then we will see what happens. The injections are much more convenient then sitting with an IV for 3 hours on Remicade. Hopefully I some results. If not, I am DONE with drugs.
Posted 4/27/2011 5:46 AM (GMT 0)
My Doctor originally suggested going on Imuran while i was still on Remicade, however because the first few doses had been working so incredibly well, we decided to leave that for another time if it came down to it, we have talked of other options if remicade stops working such as humira and imuran, now i just basically have to find out what route we are going to go. I seem to be getting progressivly worse and i am hoping i can get ahold of my doctor tomorrow so that he can move my remicade scheduling up, because i go away on vacation in about 9 days and was supposed to get my infusion right when i got back. Im hoping he will just move up the schedule to 6 weeks and maybe increase dosage...i was really excited when remicade was working so well, i seemed to be getting my life finally back on track...now it just seems like i had a month and a half of false hope.
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