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For those of you on Remicade...

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Ulcerative Colitis
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Posted 4/24/2012 6:27 PM (GMT 0)
How long did it take for you to accept that it was a)working or b)not working for you? I have just finished my 3rd dose of Remicade and while I AM better, I am certainly far from normal and nowhere near this magical and elusive remission I keep hearing about...

At what dose did Remicade really start kicking in for you? Or when did you finally say that it wasn't working for you? My options with Remicade right now are to increase the dose or cut down the time in between dosings. We are also going to add Imuran soon (blood tests already in) because studies show that folks on both Imuran AND Remicade do better...

So, one of my questions is: should I increase my Remicade dose (right now on the lowest dose) OR should I keep the same dose but cut my in-between time from 8w to 6w?

Ta and thanks for any advice!

Lisa
Posted 4/24/2012 6:49 PM (GMT 0)
For me, I could tell they were having an effect around the 3rd or 4th infusion. However, I would see my symptoms return around the 6 week mark and by the time I reached 8 weeks, I was in a full blown flare. My Dr increased the dosage and shortened the time between infusions. I would increase the dosage first and if that does not give you noticeable improvement, I'd shorten the time between infusions.
Posted 4/24/2012 7:07 PM (GMT 0)
I agree. Start with increasing dose. Give it some time. Then cut time. more often you go; the more it costs. :(

It's been too long for me to remember how long it took to work. I want to say that it was almost immedietly.

But stick to just remicade. If I am in a flare and am going in for remicade; I can ask Dr to give extra shot of prednisone. They put it right in with the iv. I don't take it at home; just the extra shot of it at infusion. It will really help to put you in remission.

Posted 4/24/2012 8:48 PM (GMT 0)
Hi Lisa,

I was on prednisone when I began remi last april 2011, within a couple of days after my first infusion my symptoms went away but they came back two weeks later. After I got off pred in June of 2011, I felt like the remi was not working for me as good as it should. I would always get better after the infusions but it was like 5 steps forward and 4 steps back.

I asked my GI to increase the dose and/or move up my doses to 6 weeks, he told me to hang on for a while longer. I am glad I did.

I was so upset by this and almost ready to get my colon out, as I that was the last option for me. In Nov 2011 about 7 months later I felt great and since then have been doing very good, I had a sigmoidoscopy in Dec 2011 and confirmed that.

Hang in there!!!
Posted 4/24/2012 9:18 PM (GMT 0)
I've been on Remicade almost a year now and I'm not convinced it has helped at all. I just had my second infusion at the increased dose of 430mg (from 300mg). But then if I stop I could form antibodies and maybe I would have been flaring worse without it? I'm gonna concentrate on getting out of this flare and then maybe consider stopping the Remicade.
Posted 4/24/2012 9:40 PM (GMT 0)
Hi Beth, Thanks for your response. So did you do BOTH? Moving up the Remi treatment and increasing the dose? Or just one? Or neither? And it took about 7 mo for you to really feel well again?

Ta and thanks,
Lisa
Posted 4/24/2012 11:24 PM (GMT 0)

SurferChick said...
I can ask Dr to give extra shot of prednisone. They put it right in with the iv. I don't take it at home; just the extra shot of it at infusion. It will really help to put you in remission.

I have not heard of this combo before...IV pred and Remi. Has anyone else had experience with it?
Posted 4/25/2012 12:32 AM (GMT 0)
When I'm getting my infusion sometimes people get iv pred. before they start the infusion. I thought that was more to prevent an allergic reaction?? But maybe I"m thinking of something else. I only get benadryl, oral tylenol and then the remicade.
Posted 4/25/2012 12:54 AM (GMT 0)
It look me around 4 infusion to kick in. I was in remission for around 1 yr then it's stop working. My GI double the dose, it work for awhile, and now it's stop again....
Don't give up !!! You can have your GI order a Lab to check your remicade level if it's low then you might need to increase your dose.

by the way I always take 30mg prednisone before the infusion.
Posted 4/25/2012 1:20 AM (GMT 0)
I just got my first infusion and in addition to the Tylenol and Benadryl, they pre-dosed me (through the IV) with Solumedrol, which is a steroid similar to prednisone. And yes, it is to prevent allergic/autoimmune type reactions to the Remicade. It must have worked wonders because I never felt a single side-effect and felt GREAT the next day. (Have no idea if I would have had a reaction otherwise.) It has been less than a week, so I have not yet seen any change in symptoms, but I'm fairly symptom-free anyway since I'm still tapering off the prednisone. Can't wait to see if this drug will keep my symptoms at bay after I'm all the way off pred, or even better - actually bring me a solid poo as I have heard it can do for some! *fingers crossed*
Posted 4/25/2012 1:21 AM (GMT 0)
My dose did not increase and they did not move up my time. It just took a lot longer than i expected. I was also on imuran until October.

How much improvement have you gotten?
Posted 4/25/2012 1:26 AM (GMT 0)
Bootstrap,

Just curious...What dosage of Prednisone were you on when you started your first infusion? Did you wait to taper all the way first before starting remi or did you know early on that the pred was not working for you?
Posted 4/25/2012 5:26 AM (GMT 0)
For me it took only a matter of days for it to kick in and I was flaring like crazy so I consider myself lucky.
Posted 4/25/2012 12:41 PM (GMT 0)
3 infusions is not enough time to start altering the protocol.
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