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Curious about Remicade

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Ulcerative Colitis
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Posted 9/18/2009 5:10 PM (GMT 0)
How many people on here are using it as a long term drug for maintenance of remission?

How many people did it not work for at all?

How many people did it work for at the beginning and then stopped?

How many people noticed only a slight improvement?

Thank you!

Posted 9/19/2009 6:56 PM (GMT 0)
I have just had my third loading dose last Wednesday and it still hasn't worked.  They even raised the dose from 5kg to 10 and still no luck. 
Posted 9/19/2009 7:20 PM (GMT 0)
I was on Remicade for six months. Three days after my first infusion, it started working. I felt almost normal again. I was still on Prednisone at this time, too (finally got off in January). Remi seemed to be working for the next two or three infusions, but I started flaring again in February. My GI and I did not want to start Prednisone again. In March, he added Lialda. I was also taking Pentasa. I had a colonoscopy in May which showed severe colitis throughout my colon, however, my rectum looked good. He upped my Remicade for May to 10mg/kilo. That night I started hemorrhaging. I don't know if it was the Remi or not, but my hemoglobin had dropped to 5.3. I was hospitalized and told that it was time for surgery. I had a total colectomy w/ileostomy on June 2nd, but they left my rectum so I have the possibilty of a reversal. I see my surgeon in November. While I feel great and can eat whatever I want, I hate having this bag. I'm hoping it won't be permanent.

So for me, Remicade didn't end up working. I tried it for six months, but didn't have success. I never had any side effects after the infusions, but it just didn't work for me. I failed all medications and just was tired of feeling sick all the time. I had been on Prednisone for over two years, but every time I tried to wean off it and got to the lower doses, I'd flare.
Posted 9/19/2009 7:36 PM (GMT 0)
I had three infusions and it did not help, so the doctor had me stop
Posted 9/19/2009 8:39 PM (GMT 0)
It put me in remission after the second loading dose and I've stayed in remission for 3 1/2 years now.
Posted 9/19/2009 11:15 PM (GMT 0)
You sound like you are expecting it not to work for you...so it probably won't. The mind is powerful, too.

It did wonders for me from the first day, as I expected it to.
Posted 9/20/2009 1:27 AM (GMT 0)
I have been on Remicade for years.It has been a miracle drug for me.

Diagnosed  Crohn's, 1998..Gangrene Small Bowel,1998..Ostomy Take Down,1999..TPN for 5 1/2 months..Adhesion Removal,1999..Abdominal Hernia Repair,2000..Kidney Artery Bypass,2001..Diabetes,,Sleep Apnea,,Silent Heart Attack,,Blocked Kidney Artery after the Bypass..Bulging Disks, Pinched Nerve..MEDS--,Purinethol,Folic Acid, Fish Oil,Remicade,Bentyl,Anamantle Cream,Cortifoam ,Tramadol, .and many more. 26 meds..

Posted 9/20/2009 1:59 AM (GMT 0)
Can anybody tell me what would be considered working? Stools are still not formed. They vary. I did notice that the number of times I would go in a day is dramatically less. I couldn't count before because I would go all night and all morning and struggle and nothing would come out. Today I went once after breakfast before work and then once after dinner. I don't remember the last time I just went two times. It is just not formed. Is that a start of positive things to come I wonder? I guess I will see what tomorrow brings. Maybe it will be like today. I don't know now if it is the Remicade or the steroids.
Posted 9/20/2009 2:36 AM (GMT 0)
My son was on it for 8 months. Early on, it seemed to work but only in conjunction with prednisone. As time went on he needed to be infused every 4 weeks and upped to 10mg/kg. Finally his body made antibodies to it. For us, it was not the miracle drug but I do understand that there are a lot of people out there that have been helped greatly by it. He had surgery 3 weeks ago and things are going very well. I must say that there is a big part of me that is happy, that for us, the decision was taken out of our hands and that he is off this drug....considering that the docs are just waiting for H1N1 to start rearing it's ugly head again. I am very glad that we do not have to worry about him being immunodeficient.
Posted 9/20/2009 5:06 AM (GMT 0)
I'm planning to use Remicade long-term. It took me 4-5 infusions plus the right combo of rectal meds to get in remission, but I've been there for 9 months. I have lost half of my hair, but I was lucky to have a lot to start with.
Posted 9/21/2009 2:32 AM (GMT 0)
I was in remission the day after the first dose (and I was in the hospital at the time). I had a terrible flare (30+ times a day) a week before my 4th dose was due so they bumped up the infusion and the next day I was back to normal. I am not on any meds now other than Remicade and I don't have a single UC symptom. I've had 5 infusions.
Posted 9/21/2009 2:08 PM (GMT 0)
I just had my third dose the beginning of sept.  and I'm on pred(tapering down 1 mg a week until I am off; right now I'm at 10mg).  The more I taper down on the pred the more I'm going to the bathroom.  I've noticed this last week I've had alot more urgency.  So, I don't think the remi is working yet.  I told myself I would give it a year.  I say that now because I'm still on the pred and pred puts me in remission almost immediatley.  With the urgency coming back I don't think I will be able to hold out a year.  So we will see.  I hope it works for you.

Posted 9/21/2009 2:08 PM (GMT 0)
I have been on Remicade for 4 years... It has given me my life back. It took 7 infusions for the full effect. The side effects (tired, fluish for the next day) are nothing compared to how I felt before I started.

Give it a try... you can always stop.
Posted 9/21/2009 10:44 PM (GMT 0)
I was on Remi for about 6 months. I went into an awful flare a couple of days after an infusion. Bloody D 20+ times per day. Abdominal Pain, etc. My doc drew blood and sent it for "Prometheus" testing. I did not make antibodies and I had PLENTY of the Remi in my blood still. Thus they took me off it. I was so disappointed because I spent most of September last year in the hospital and nothing they tried (3 or 4 different rectal meds, high doses of IV steriods, etc) worked. Since my doc took me off the Remi I initially took Prednisone, then added Azathioprine. Knock on wood, I am doing great.

Good Luck,

Jen O
Posted 9/22/2009 12:11 AM (GMT 0)
And....I've been on Remicade for over four years now and doing great. I was very sick when I started; next day (and this is my story!) I felt better and have never looked back. I continued my life, promoted into my current position where I travel quite often, and just feel pretty good most of the time. I haven't had any side effects at all. Good luck with your decision.
Posted 9/22/2009 1:51 AM (GMT 0)
I did my first full round of Remicade and my white blood cells dropped so low and so quickly that they took me off before my second dosage. It helped with my arthritis after the first infusion, but i was still on all of my maintenance meds.

Hope you find something that works. Good Luck.
Posted 9/24/2009 9:04 PM (GMT 0)
I've been on Remicade since March and receive infusions ever six weeks. It's only in the last 2 weeks that I've formed a semi-normal solid stool.

Remicade didn't do anything to reduce symptoms until my 4-5 infusion. The GI says the UC may have gone away on it's own but still does not want me to stop taking remicade as it's likely doing something positive.

The research team at the hospital ( Mt.Sinai hospital specializes in C/C, one of two of it's kind for C/C in NA ), say Remicade will likely stop working after awhile and it's not designed to be a long term solution to UC. I'm going to hope it holds out as long as possible.
Posted 9/24/2009 11:05 PM (GMT 0)
     I saw a GI specialist today at the Univ of PA Hospital.  This was strictly a consult as I have been flaring quite frequently and my flares are lasting longer.  Unfortunately, I have become prednisone dependent and I already have osteoporosis.  The GI doctor at the U of Pa was in total agreement with the treatment I have been receiving from my regular GI doctor here in south Jersey.  He did suggest Remicade (I knew he would because my regular GI doctor has been pounding my ear about it for the last two years).  However, he gave me a list of possible side effects from Remicade and it scared me to death!!!  I was told last year, while hospitalized with UC, from my GI doctor's associate, that I was NOT a candidate for Remicade as I tested positive on the TB skin patch test years ago.  I mentioned to this specialist that I heard that Remicade stops working after awhile...and you know what he said?  He said.."Then you can try Humira."  Well, no thanks.  I am not a ready for surgery yet, so guess I will just have to plug along with the Colazal, 6MP (wonder if that is even working anymore) and Cort enemas and hope for the best.  I surely don't want to start up with prednisone anymore either.  By the way, he did give me a diet to follow and while looking it over was quite surprised to find foods on it that a lot of people in this forum say to stay away from.
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