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Here comes the remicade..

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Ulcerative Colitis
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Posted 7/3/2015 3:07 PM (GMT 0)
Because of my allergic reaction to asacol, (myocarditis, heart inflammation) that rules out all mesalamine drugs and in a couple days I'll be getting my first remicade infusion. A little nervous (increase risks of cancers/diseases/infections) and a little excited (possibility of living a remission normal free life for as long as possible). Just wanted to hear from anyone else taking it how it's working for you, or even anyone who just knows a lot about it. Thank you!
Posted 7/3/2015 4:47 PM (GMT 0)
I use Humira, only side effect I had was horrible headaches but ks1905 told me to use antihinstamines so I take one the day I take my shot (before I go to bed) and I no longer wake up with horrid Humira headaches.

The more serious side effects are very low risk, I doubt they're any worse than immunosuppressants are, the risks are low and all meds have risks but so does leaving disease untreated (as I had to due to being allergic or non-responsive to all other meds) and it's the first time in 24 years I've been in remission so of course I'm going to be on team biologics lol.

Remi is a little different in that it's made with a mouse protein and Humira is made with a human protein...but remicade is suppose to be more effective apparently for UC (I have crohn's colitis).

Best of luck that you find a full remission with Remicade!
Posted 7/3/2015 4:50 PM (GMT 0)
Remicade is amazing!!! Some people get immediate overnight results and some people take a little longer
And there are those the don't respond at all
I would highly recommend that you ask your doctor to put you on imuran or 6mp while on remicade because not only does that help UC itself it also prevents you from making antibodies to remicade so that you will be able to use it for longer
The infusion itself is painless and it takes about two hours or so
Often you will be premedicated with Benadryl and Tylenol or a steroid
If you live in the U.S. Than you should sign up for remistart it pays up to 10k for infusions that insurance doesn't cover
Good luck
Posted 7/3/2015 5:32 PM (GMT 0)

You-See said...
Because of my allergic reaction to asacol, (myocarditis, heart inflammation) that rules out all mesalamine drugs and in a couple days I'll be getting my first remicade infusion. A little nervous (increase risks of cancers/diseases/infections) and a little excited (possibility of living a remission normal free life for as long as possible). Just wanted to hear from anyone else taking it how it's working for you, or even anyone who just knows a lot about it. Thank you!

I like this quote - pretty much sums up how I felt (and I am sure many other people feel) before I got my first infusion.

I was in hospital about 5 weeks ago with a nasty flare that IV steroids was struggling to control. They gave me my first Infliximab infusion and within 24 hours the bleeding had stopped and with 72 hours I was back to normal stools. Since then I have got better and better and although its yet to be confirmed by scope I feel like I am in full remission, going once or twice a day large fully formed stools, no urgency, minimal need for toilet paper etc. My final losing dose is on the 14th and I will be on 8 weekly infusions after that...

Post Edited (Jonny_Murray) : 7/3/2015 11:37:26 AM (GMT-6)

Posted 7/3/2015 5:38 PM (GMT 0)
I noticed my first positive response from remicade a week after infusion #2, a much bigger response after infusion #3, and steady improvements thereafter. I reached remission after a full year on remicade, the only medication for uc that's done it for me.

Sherry (red_34) has been in remission with remicade for 6-8 years or more now. I'm a year in remission with remi.
Posted 7/3/2015 7:11 PM (GMT 0)
I'm on buedesodine right now which is already suppressing my immune system so that plus remicade could increase my risk factors right? Maybe I should stop the steroid first?
Posted 7/3/2015 7:25 PM (GMT 0)
You're GI should be guiding you in this regard, before you even start a biologic.
Posted 7/4/2015 1:22 AM (GMT 0)
No, continue steroids until remicade kicks in. Steroids and remicade combined is fine, your immune system still works fine. Both medications work in different ways.
Posted 7/4/2015 1:33 AM (GMT 0)
I agree with pb4. You are going all over the place ad-hoc with ideas. You can't have a game plan that is all over the place. You need to listen to your GI and let them guide you.
Posted 7/4/2015 2:11 AM (GMT 0)
You-See, a combination of Remicade and Uceris has given my back a more normal life. I started Remicade on 8-week cycle and didn't realize I should tell my doc I was having trouble the last couple of weeks. After several infusions I changed to a 6 weeks schedule and added uceris 9mg daily. It was the correct combination and I am so much better! I have been this regiment for over 1-1/2 years and feel good about it. I hope to someday not need either but right now remicade every 6 weeks and uceris daily has giving back my life. I wish you the best.
Posted 7/4/2015 3:17 AM (GMT 0)
Remicade was a life-changer for me. I had been unnecessarily suffering and didn't even realize it until after remicade. I experienced immediate results after the 1st infusion...my GI cramps went away which was like a Christmas miracle. We had been sidekicks since 2001. I progressively got better after subsequent infusions. The only side effect I had was a headache during the induction phase. I do not take a immunomodulator with it and my new GI doc is fine with that.
Posted 7/4/2015 12:47 PM (GMT 0)
Ok thanks guys, just nervous to start up the remicade but I hope it changes things around for me like it does most people. Right now my colitis consists of the urgencies with constipation and leaky bowel stuff, not much diarrhea at all. Plus I have no appetite whatsoever. Can remicade change this situation around pretty quickly for me? In most cases?
Posted 7/4/2015 3:43 PM (GMT 0)
My hubby was nervous about me going on Humira when my GI asked me to chose whether I wanted to start with either Remicade or Humira (I didn't give a crap....well maybe I did lol but not in the same way hubby was concerned) and my GI told hubby that if I was his wife, he would have no concerns about me going on a biologic especially at the point where I was with my crohn's colitis and with having developed the RV fistula (and having the IBS coexisting as well since I was dealing with too much crap literally) he said that the damage that was being done to my body by IBD was a much scarier risk compared to taking a biologic...so truth is, the inflammation is causing damage and the longer it goes untreated the greater the chance of losing your colon which is also what my GI told us would be my only other option since I haven't been able to use other oral meds due to being allergic or unresponsive to them.
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