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Remicade - when has it worked for you?

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Ulcerative Colitis
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Posted 9/28/2012 3:01 AM (GMT 0)
Another post about Imuran made me wonder the same thing about Remicade.

Finally getting the chance to go home tomorrow after 3+weeks in the hospital. Daughter had the 1st dosage of Remicade on Monday. Been on TPN since 2nd day in hospital along with 2 weeks of predisone/solumedrol. Pain has subsided but still pain when going the bathroom & still blood in stool. Started solid food yesterday & tomorrow go off of IV's completely including solumedrol and switch to pill form & will continue enemas at night. PICC staying in until next treatment of Remicade in a week & a half.

Basically told not much will change until next dosage of Remicade, so we will be more comfortable at home (which we so agree with!) Knowing the dosage after the one coming up is 4 weeks after I am hoping she doesn't have to wait until then to get relief.

So fellow Remicaders... how long until your bathroom breaks started to decrease into a reasonable number? How about the blood? Please share!
Posted 9/28/2012 3:11 AM (GMT 0)
I could definitely see a difference after the second infusion, and after the third I considered myself in remission. I continued to get better over the first year - more energy, less urgency. I've now been in remission for over six years on remi. Remember, her colon didn't get turned into hamburger in a week, it will take some time for it to heal up. Even with medication working, the healing still has to take place for the symptoms to go away.
Posted 9/28/2012 3:23 AM (GMT 0)
That's positive. Thanks. Are you still on Remicade? If not, how was it to wean off of?

I have type 2 diabetes in my family. Didn't even realize cortisteriods can bring that out. I will keep that in mind to keep an eye out for.
Posted 9/28/2012 3:33 AM (GMT 0)
I'm the same as Judy, I saw results as soon as the second infusion but after my 3rd I did a lot better. I've now been on Remi for a year and I have been doing very well. Hopefully your daughter will do as well.

Remicade is usually used long term because the body can build up antibodies against it, so to quit and try to start it again may not be as successful. But there has been people who stop the Remi (no weaning necessary) and maintain their remission with 5-ASA's.
Posted 9/28/2012 4:34 AM (GMT 0)
I had positive results about a week after my second infusion. I was going to the bathroom around 15 times a day and now go around 3 times. Just had my 3rd infusion yesterday.
Posted 9/28/2012 12:10 PM (GMT 0)
Wow to think in 1-5 weeks to not always be tied to a bathroom... Brings tears of happiness to my eyes. Will stay positive in the wait! Thanks!!
Posted 9/28/2012 5:17 PM (GMT 0)
I'm just throwing in a different perspective. I had outstanding improvements the day after my first dose. After my second dose, I stayed the same. Then near the end of the wait I started having issues. My third dose did nothing. My forth dose was double the strength (maximum dose of 10mg/kg) and it helped some. It also really wore me out for about a week. I on Prednisone at various doses during that time so I'm not sure where all of my positive effects came from. I'm guessing the first dose really did help since I saw such drastic improvements.

Given that I was building up a resistance to Remicade already, had a polyp develop quickly, and was still having accidents at 40meg pred and max Remicade - I opted for surgery.

I just wanted to share my experience. I really do hope the Remicade helps your daughter! It is very nice to not be tied to the bathroom and to get rid of the other negative parts of UC.
Posted 9/28/2012 5:45 PM (GMT 0)
For those of you that had positive experiences (babygoose, red_34, ...), were your stools solid or still loose when you noticed improvement?  I was like babygoose and going 15+ a day (diarrhea all the time) and when I started remicade at the begining of this month it has brought my urgency down to about 4-6 times a day.  I am back to sleeping through the night :).  I have had two infusions so far and I am about 2 weeks from my next infusion.

I am so thankful that it is helping as I am now seeing solid poops half of the time.  I was hoping that I would have been having solid poops all the time by now (usually solid poops are just in the morning).  I stopped talking colazal (was on it for a year - i think it is/was making me worse - hard to know for sure but now when I stop taking it I feel a little better and when I start it back up I notice a little more symtpoms) and am still talking nightly mesalamine enemas.  I am going to talk to my dr about going back on asacol or trying lialda.

My dr says that depending on what happens after the third or fourth infusions, I may need to add on something like 6-mp/imuran.

Does my progress on remicade sound familiar to you that have seen positive results?  

Posted 9/28/2012 6:39 PM (GMT 0)
i think the first dose helped the most and by the 5th, it was ineffective. i hope it helps your daughter!
Posted 9/29/2012 1:59 AM (GMT 0)
I've been cleared for my 6th infusion in a couple of weeks.  I expect it may be my last.   It hasn't done anything for me, which is why I'm surprised they are even bothering. 

Unless they (or someone) knows otherwise.

Is it possible it could start to work after so many failed attempts?

Posted 9/30/2012 8:12 PM (GMT 0)
I do have to say if we are waiting around for the 6th dosage we are going to be so frustrated! I hope it works for you or I agree find something else.

I can say the poops are solid now & the blood has decreased. I'm not sure if that is from the steriod enemas, previset, remicade or prednisone. Just want to see progression enough to stop the enemas. There are some things mothers shouldn't have to do to their girls & enemas are one of them. (She won't do them herself, they are too painful & she is too scared )
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