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Ulcerative Colitis
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Posted 12/5/2012 2:31 AM (GMT 0)
Well I have ulcerative colitis and I'm in ANOTHER flare up! I've and it for the past 2.5 years now and I'm on asacol HD canasa and currently on prednisone. I've been meaning to ask my doctor about the remicaid shots but I would like to hear from the people that actually use it first and hear what you have to say. What are the major side affects? Is it worth trying? The reason being is that i keep getting flare ups every 13-15 weeks and the canasa gives me horrible cramps and gas and loss of appetite and quit frankly I'm sick of sticking things up my you know what! so please any advice would be greatly appreciated!
Posted 12/5/2012 2:56 AM (GMT 0)
Hi and welcome :) Remicade is actually an infusion. You go to a hospital or infusion center for about 3-5 hours every 8 weeks. I've been on Remi for over a year and I love it! It literally gave me my life back. But before trying Remicade, have you discussed other options with your doc such as Imuran or 6mp? Usually that is the next in line before resorting to Remicade.
Posted 12/5/2012 2:59 AM (GMT 0)
Thank you sooooooo much!!! I'm so glad I found this place! Now I have people to vent to and ask questions. Thank you red!!! I'm gonna look into that asap!
Posted 12/5/2012 3:08 AM (GMT 0)
Please feel free to ask anything you want here and no need to be afraid of being too graphic...we've heard it all and have been there :)

I also wanted to mention there are other drugs you can try before resorting to Imuran or 6mp...there is quite a few 5-ASA's you can try first. Imuran and 6mp are immune suppressors and are considered to be the "heavy guns". But this is something you should discuss with your GI.

Do you know the extent of your Uc?
Posted 12/5/2012 3:42 AM (GMT 0)
Do you have any idea why you keep getting flare ups? Do you back off the meds when you are feeling better? If you can figure out why you keep having the flare ups on a regular basis maybe you can figure out how to stop it from happening.
Posted 12/5/2012 1:10 PM (GMT 0)
I'm on remicade and have been for more than 2.5 years now. Before that I was on humira. Remicade has so far worked better for me in terms of length of time, but both worked well for me. Like Red, I got my life back from these meds. I go to the bathroom once or twice a day, no blood, no urgency. I'm very happy with the decision I made to go on Remicade.

I have also tried various oral and rectal meds prior to the tnf blockers, but didn't do Immuran or 6mp. My flares were too bad too fast and I didn't have the time to wait for those to kick in. Pred only did so much for my flares, but it wreaked absolute havoc on my body. I couldn't do that anymore.

I couldn't be happier that I made the choice I did. But it is a big decision and one you should talk with your GI about in depth. Good luck!
Posted 12/5/2012 1:54 PM (GMT 0)
As we always say: everything works differently for different people. But for me Remicade was a lifesaver. I have been on it for approx 7 years. For first 4 years or so, I don't recall having a single flare. Following years i've had some flares (probably most were self-caused, diet). This past year I've had several, and currently flaring thus I just had a sigmoidoscopy and things showed bad inflammation thus Dr might be advising to switch to Humira.

Good Luck to you! Whatever you do, keep fighting. If you give a medicine a good amount of time trial & it isn't working, I'd be adamant that you need to try something else. There are so many drug options out there.
NEGU Never Ever Give Up
Posted 12/6/2012 12:54 AM (GMT 0)
You people are AWESOME!!! Thank you everybody! I take 4800mg of asacol a day and sometimes after taking for so long i just start to feel blah know what im saying so i backed off of it for about 10 days and the next week i felt great! but then on that Monday morning i knew i just knew that feeling and i was like NOOOOOO and like the sun rises here came the flare up! I also been getting skin abscesses and he said the meds can also contribute to that and thats why sometimes i take a break from them. Its like im in a situation i can't win and thats the really frustrating part about it!
Posted 12/6/2012 1:24 AM (GMT 0)
why did you stop taking the Asacol?
Posted 12/6/2012 3:38 AM (GMT 0)
How long did it take most of you for the Remicade to start working. I'm about to take my 4th infusion but I still have a lot of urgency and frequency, but not blood. A lot of gas as well. Been roughly in this state for a year and on 10-15mg of Prednisone as I wait for the Remicade to kick in.

Also, how much of a factor did diet play once the Remicade was working?
Posted 12/6/2012 7:31 AM (GMT 0)
Welcome to the forum!

1st infusion got me good. 2nd even better. 3rd almost in remission! Its good stuff:)
Posted 12/9/2012 7:17 PM (GMT 0)
Got my first infusion with Remicade a week ago, had very little change.
Hopefully will see some change after the second one.
My brother is also on Remicade, it took him a few weeks to see any relief from it. Any other input from others would be great.
Thank you

Post Edited (Tuch) : 12/9/2012 12:20:15 PM (GMT-7)

Posted 12/10/2012 1:09 PM (GMT 0)
Remicade has turned it around for me.  No cramps or anything now.  Side-effects cold sores, watery eyes, sinus problems, tiredness, all of which are preferable to the pain I used to endure. 
Posted 12/10/2012 1:34 PM (GMT 0)
mjs1980...i get what you mean when you said you got sick of taking pills every day when you started feeling better, but seriously thats the worse thing you can do, for me at least. Whenever I did that my UC came back with a vengence...

I was diagnosed at 25 with proctitis and had it easily under control and in remission with just Asacol, like you I felt better and i stopped taking my meds. Something triggered a flare ( i think it was a combo of quitting smoking and getting preggers) but now it had spread and it took a lot longer to get under control with Asacol, Rowasa enemas, and Canasa supps again...started feeling better, got lax on my meds....

Quit smoking again rolleyes   ended up in the hospital, diagnosed with Pancolitis and have been stuck in some varying degree of severity for about 2.5 years now...was put on Prednisone multiple times, Lialda, then Apriso, Rowasa, Canasa, 6mp...ended up recently needing a blood transfusion cuz i was bleeding so much and so anemic, finally my Dr and I discussed going on Remicaid since nothing else was working...quite frankly it terrifies me BUT after the first infusion (i've had only 2 so far) I feel almost 100% normal. Which has been a loooong time coming.  The only side effect i feel so far from the Remi is that im exhausted at the end of the day on infusion day and the day after.

Moral of my story is: take your meds..if you can get into remission with the safer, less side effect drugs...do it.  This is something we're going to have for life and we need to learn to live with it and that means being proactive in taking our meds even when we're feeling better.

Posted 12/11/2012 1:35 AM (GMT 0)
OMG Lucky i fel so bad for you!!! I do, once i start to feel good i stop everything. I think i do it just cause ya know, it makes me feel like i don't have anything wrong with me and i'm back to my old self. But i'm not :( seriously I've been depressed since 2010 when i was diagnosed. I can't get outta this funk!!! My social life has completely went down the tubes, I'm mad at the world and hold grudges like never before. And that's not me! Especially this last flare up, I've been really depressed on this one but luckily I found this site and it helps me vent a little.

I mean who else can you talk to about taking 15 poops a day too??? I use to be a guy that had no problem with the ladies now pffffff fahgettaboudit!!! Having to go to the bathroom is CONSTANTLY on my mind so now I don't even go out anymore, i sit home like a hermit and it makes me so ANGRY! I'm just really really frustrated right now!!!
Posted 12/11/2012 1:41 AM (GMT 0)
mjs it just sounds like youre impatient. Get yourself in remission, keep taking meds to stay in remission. Then go out and have fun! Been waiting 2 months now im finally starting to go out more and more.
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