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Starting Remicaide

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Ulcerative Colitis
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Posted 12/14/2012 2:37 AM (GMT 0)
I have had UC and IBD for over 25 years. I was on Pred for 3 years about 20 years ago. I have run the course through the 6 mp, Asacol, etc. The pred is not working anymore. 3 months ago I lost so much blood that I had to have an emergency transfusion.

I switched Gi docs and asked if I could get on Remicaide. I start treatments next week. I am looking for what people have experienced and what I can hope to have happen as an outcome.

I am 55, male, 5'9 185 lbs. Non smoker/drinker.

Right now I am in another flare with eat and run plus blood. I go through bouts of constipation and then severe cramps when my system finally naturally lets go. I travel a lot domestically and am always afraid of long flights or travelling with co workers. I do not want to go into details as it is none of their business.

Any words of encouragement or insight into Remicaide would be greatly appreciated.
Posted 12/15/2012 12:38 AM (GMT 0)
I have been on it for a year and a half, everyone responds differently. It took me 6 months to get into remission. At the first infusion I felt better for a couple of days, then flared up again. It was 5 steps forward 3 back for awhile, very rough emotionally.

Side effects, headaches after the first few infusions and tired after the infusions for the rest of the day for about the first year.

Recommendations, drink plenty of water the few days before you go and ask about taking tylenol and benedryl (could be why I was tired) prior to the infusion.

Best of luck, take care. Any questions just let me know, had an infusion yesterday : )
Posted 12/15/2012 12:58 AM (GMT 0)
remicade helped me after the first infusion. it was actually pretty easy and the infusions were always fun- i had an awesome nurse. it ended up losing its effectiveness pretty quickly. after 5 infusions, i was full on flaring again. i was pretty sad because it did help my UC. my main side effects were 3 day headaches (just couldn't do anything, go anywhere) and tiredness.
Posted 12/29/2012 7:22 PM (GMT 0)
I am taking remacaid for UC n it is working great for me. The only complaint that I have is that I get infection after remacaid but I would deal with infections any day over a flare. I use to b in the hospital every other month and I too also had to get a blood transfusion. I'm grateful for remacaid cause I haven't been back to the hospital for UC since I started it. Good luck to you and I pray it works as well for u as it has for me.
Posted 12/31/2012 12:23 AM (GMT 0)
I was on remicade for years and it started to work for me after the first infusion. I even got to a point where a nurse would come to my house and that was great! Eventually my insurance didn't cover it anymore and I moved onto humira which was just as good.
Posted 12/31/2012 12:39 AM (GMT 0)
I did 8 months of remicade this past year. I had a great infusion nurse. My GI has an infusion center in their office. Big comfy chairs and blankets. I was usually tired the day after the infusion but other than that no other side effects.
Posted 1/3/2013 4:08 AM (GMT 0)
Your story is similar to mine, 25 plus years of UC. Remicade worked for me immediately. I expected it to, and it did. I was so excited, relieved about its potential that I cried a little during my first infusion.

I also do not reveal to anyone that I have UC, not to my friends and certainly not workmates. Lessons learned.
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