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Considering Trying Remicade? and helpful info or experiences?

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Ulcerative Colitis
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Posted 11/28/2010 12:31 AM (GMT 0)
so i have had uncontrolled ulcerative colitis for the past year and a half. i am in college and just want to get this figured out asap. i have tried almost everything. i didint respond well to any of the 5 ASA drugs and i am now on the azathioprine and am not responding well and have not been seeing the proper improvement after 10 weeks. it has actually been doing bad things to my liver function so i recently tapered from 100mg of azathioprine to 50mg. im still on 20mg of prednisone and 50mg of azathioprone and probiotics.

i have been considering moving to remicade infusions and im a little nervous. has anyone had these infusions or know anything about them? thanks for any info.
Posted 11/28/2010 1:14 AM (GMT 0)
I just decided (about 3wks ago) to start Remicade. I hope to get my first infusion this week or next.

Ask me anything.  It took me over a year to finally decide to accept that my body needed something stronger. 

Posted 11/28/2010 1:52 AM (GMT 0)
I have been told that Remicade is my next treatment option as well.  What made you after a year decide that you are going to try it out?
Posted 11/28/2010 5:08 AM (GMT 0)

I have been flaring for about 5-6 years. I too am on Colozal (9 pills).  I also take Rowassa and VSL #3 (sometimes).

I used to be on Asacol but out of the blue it stopped working. My doc wanted to put me on it and I said no, I want to try the other 5asa meds. I suggested Colozal because with Asacol I was passing the whole pill and Colozal breaks up faster.  He said I could give it a try.  Well after my last colonoscopy this past month he said that I am in a major flare and he was surpised I haven't been calling him sooner.  He said I adjusted my life so much to my condition and symptons to a fault.    I make about 10 - 15 pitstops a day, I have pain, I am careful where I go in regards to bathroom situations (need to know how many stalls there are...knowing where the bathroom is,  is not enough), throwing up atleast 1 a week. But I do it and then go on my daily business.
He said that I started to get a few polyps b/c of the flare.  Since we have UC we have a better chance of getting colon cancer regardless of how often we get checked.

So that was a wake up call to me.  Sucking it up and dealing with the pain is actually bad.  He wanted me to go on Predisone until the Remicade kicked in. I refused it. Since he really didn't want to put me on it before because of the side effects.  I told him I can deal with my issues a few more months.

So in a nutshell I decided to go on remicade because "dealing" with my symptons was doing much more harm. 

Remicade works faster than 6mp. Both have scary side effects, but if one works faster then I would want to go with that one.  Also I have found more people who have better success and less side effects with remicade than with 6mp. My sample size isn't that large for this.  Its just hte people who I have talked to.

I have left sided moderate UC.

I have had UC since I was 19.

Posted 11/28/2010 1:59 PM (GMT 0)
I have had two Remicade treatments (one single and then a double dose exactly one week later) after a year of symptoms and different mess making no difference, even after being hospitalized. I have mixed feelings. The plus side...I've finally seen some improvement! This is the first drug that I can feel myself getting better rather than worse. That being said, Remicade seems to be lauded as some 'miracle drug' from what I've read and heard, that gives great, and FAST results. This wasn't the case for me. I continued getting worse after the first treatment, and the second (double) treatment showed no progress or getting better for about two weeks afterwards. That dose did however stop my symptoms getting worse within a day or two.
I had a bad reaction to the first round, shaking, sweating, trouble swallowing (but no problems breathing), but a disconnect, run a bag of antihistamine and reconnect fixed it right up. Second dose they ran the antihistamine before starting and I had no issues. The side effects after....ouch. It's been 20 days and my strength, stamina, and focus are still shot. I have no more nausea but have pressure headaches that feel like full fledged migraines. To be fair those could be the prednisone, but I'm only tapering 5mg every 7 days so..? I had a tingly numbness really bad in my hands and feet for about two weeks. It was bad enough that it affected how I walked and I had problems holding things. And i have a couple other side effects (my taste is 'off', I'm crazy hot and sweaty on and off and previously I was always freezing, and my skin felt really really dry and itchy to me, even after moisturizing but my husband said my skin felt great) my dr attributes to prednisone but I'm not sure if I agree since they're all new after Remicade.
I haven't got enough long term info to really say if I'm glad I did it or not yet. If my side effects all clear up in a decent amount of time I'd say yes. It is working for me, just slower than it's supposed to which is frustrating. But sleeping through the night, leaving the house without having to know where a washroom is, and being comfortable going to someone else's house for an afternoon is pretty darn close to heaven at this point!
Posted 11/28/2010 2:43 PM (GMT 0)
It is hard to make that decision because remicade is a strong drug. I got diagnosed with severe UC throughout my whole colon in March 2009, I was put on Asacol(allergic), than lialda(allergic) I can't take any 5 asa's because i'm allergic, than I was put on 6mp, guess what?, allergic. This all happened before June of 2009 I was put on prednesone in June for a month and I was fine within days, than I was put on pred again from the end of June until Nov. it was great but than I gained 50 pounds and it was making me crazy. I had started remicade in July 2009. It was hard to come to terms with this drug but I tried all the other meds before the remicade, so at least I can tell myself that. My theroy was I will try all the meds before the remicade or humira, I'm allergic to everything. I have been on the remicade since. It was helped my symptoms alot but I had a colonoscopy in march 2010 and it showed that my colon wasn't healing. I asked the doc if I could stay on it alittle longer. They upped my dose in August 2010 to 7.5 kg every 8 weeks and I will have a colonoscopy in Feb to see if it is healing me if not I can't stay on it. I'm hoping it is because I went from going D about 10-15 times a day with accidents to 3-6(depending on what I eat) with no accidents. I'm in school and I feel fine except the fatigue.

The first infusion I had I had a reaction, I get heartburn and a rash from the remicade, Most people get run at 150 per hour I'm 65 per hour, most people are out of there in 2-3 hours I'm there 6 hours, the first infusion was the only infusion I had a reaction(which was chest pain and shortness of breath) running me slow has helpped, I also get tylenol and hydrocrotisone before each infusion. I recommend you get premedicated(that is what this is called). I take prilosec for the heartburn and zyrtex for the rash.  This has helped. I would also give it time to work somepeople see relief right away others it takes a couple infusions.

It is a hard decision but I was at my last straw, I was horrible. If I ever get that bad again I will have surgery.  Good Luck!!!!

Posted 11/28/2010 5:43 PM (GMT 0)
I have been told by a GI (not mine) that it is worse to have active disease then the risks of Remicade. I just am having such a hard time taking this leap. I also have been told that i have moderate to severe left sided UC. I have symptoms daily but am also functioning (most days). I think because I am able to function stops me from Remicade. I do wonder what would life would be like symptom free.
Posted Yesterday 2:34 PM (GMT 0)
Actually, I kind of had the same thoughts as that GI, Stacy. I thought it was worse to be so sick than to get myself healthy and back to living life again so that is why I opted for Remicade. It worked wonders for me, and the last colonoscopy showed my colon free of any polyps and ulcers. After five years, I'm off the Remi and only taking Asacol. So far, so good. I start seeing a new GI after the first of the year, so we'll see what he has to say about things!
Posted Yesterday 6:58 PM (GMT 0)
Lonie- what meds were you on before Remicade?  Did you take it for 5 years?  Did you have an side effects?
Posted Yesterday 7:16 PM (GMT 0)
Well, I was pretty much on everything. Asacol, Prednisone, Rowasa, Imuran and Sulphazine (sp?) -- not all at once, but I did go through them all. My doctor decided to use a different method and try the Remi as a first line. I started these other meds in January when I was officially diagnosed, and by May I was starting Remicade. Because Remi wasn't officially approved for use by UC patients, he had to go through the myriad of meds before he could put me on Remi. I really felt well the whole time I was on the Remi and had no reactions, and I was on it for over five years. After my last colonoscopy in August 2009 was clear, he urged me to discontinue and start on maintenance meds. Because I was so sick before starting it, I was hesitant to stop it; I didn't want to risk feeling so badly again. I was doing the infusions in one hour timeframes, so it was being infused rather quickly but I never had any issues with it. In July, I had an infusion and a slight reaction; dizziness and nausea. The nurses resumed the infusion at a lower speed and I was fine. I assumed it was just a rough patch. At my next infusion, they started the IV and about 20 minutes in I got the nausea and vomiting and my blood pressure sky-rocketed. They stopped the IV, gave me a shot of predisone and waited for my blood pressure to drop back to normal. I resumed the infusion. The next day I had a rash and my face was puffy. My husband, doctor and me decided that my body just had enough of the Remicade, and maybe it's because my body doesn't need it anymore. So, I've been on Asacol (8 pills a day) and doing fine. I actually feel great (knock on wood!) I really thank my doctor for thinking outside of the box and getting me on track to feeling so well. The Remi was a real lifesaver for me!

Posted Yesterday 10:27 PM (GMT 0)
Remicade put me in complete remission, immediately, for the first time ever (note, that's in about 25 years).
It doesn't help everyone, but the nature of my UC must be the kind it is meant to help (autoimmune disease).
Posted Today 12:16 AM (GMT 0)
I was having a very bad flare, up to 20 BM a day, lost 18 kg in 5 months..steroid resistant ..
But after the second infusion of Remicade, the blood stopped, the pain had passed with the first infusion, now I have had my third Infusion, still feeling fine..
I was absolutely terrified when I started ... yeah yeah But everything went fine, just feeling very tired for a couple of days, like post flu symptoms.

My next Infusion will be in January..
I do not know if I will want to go on for ever...I do not know if, feeling well I can quit at a certain point..

Good luck if you decide to try,
Posted Today 12:56 AM (GMT 0)
2 infusions two weeks apart, next one one month. NO CHANGE, no side effects at the moment. 1st dose left me feeling like a flue for 3-4 days not too bad.
Posted Today 1:54 AM (GMT 0)
Peety,learning what normal is gives me hope!! Good on you!

Thank you all for the informative posts.
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