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Infliximab has worn off

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Crohn's Disease
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Posted 10/6/2009 6:55 PM (GMT 0)
I've had crohn's for about 6 years now and have been on infliximab since march of this year. It wore off after 6 weeks, but it was nothing i couldnt handle. D was 4/5 times a day, mostly soft with a liquid end. Little bouts of pain but easily sorted with a hot water bottle. So we moved my treatments from every 8 weeks to every 6. This last one was the first one for every 6 weeks. I'm due my next infusion friday week.
The infusion has been slowly wearing off over the last couple of days, nothing really major. Then today, it seems to have vanished. I've lost count of how many times i've been to the loo. Each time its pure liquid, no proper pain yet just some crampy feelings. As soon as i eat i have to go several times. My GI has said that i can up the dose of the infliximab, so that is an option. I have already been on every other drug barring methotrexate and humira. i havent had any surgeries yet.

Why cant one of the drugs just work? They all work for awhile, then the crohn's kicks up another notch and it all goes to pot again. Im in my 3rd year at uni, but its not too bad as i have spread this year over two years to reduce stress on me.
Posted 10/6/2009 7:12 PM (GMT 0)
Hi. I'm so sorry infliximab is not last long enough. I have heard of people getting infusions every 4 weeks, and of others needing a double dose 10mg/kg of remicade every 4 weeks even. And once they get the dosing right, they can stay on it for a while. I hope you are one of those people for whom the dosing just has to be adjusted, and it'll help you for a long while. I sure hope so.

This is one of my biggest fears for my husband as well - remicade saved him from surgery last year, and I worry constantly that it's going to stop working for him. I sure hope for everyone here, including you and my husband that you find the right dosage, and it works for a very long time.

((Hugs))

PV
Posted 10/6/2009 7:44 PM (GMT 0)
I know that if every 8 weeks stops being affective, they usually will increase frequency and/or the amount of Remi you get. If increasing doesn't work very well, most docs will put you on Humira, which might actually be better while in uni, as you won't need to go to the clinic/hospital and spend 3 hours getting an infusion; you do it yourself every couple weeks.
Posted 10/6/2009 8:45 PM (GMT 0)

This is my experience with Remicade.  I have been taking it since Dec. 2004.   This is my drs. thought on increasing dose/frequency and I like it.  She increases dose first instead of increasing frequency.  When she ups the dose she doesn't go to double, but to 7mg/kg.  Next she will double the dose, and when that starts wearing off she will start moving the frequency up.   I have good success with this.   Having said that, back in May, I had THE WORST 2 weeks in years.  So we moved my infusion up a week, and all was good again.   I am at 7mg/kg every 8 weeks, and I'm hoping to get another 5 years out remicade!

Posted 10/7/2009 7:31 AM (GMT 0)
woke up this morning to find myself covered in poo. I'd managed to go in my sleep. I've never done that, even in my worst flare. I'm so embarrased. I'm 23 and i live in a shared house. The other girls i live with know i have crohns but they dont actually fully understand what it means.
Posted 10/7/2009 9:03 AM (GMT 0)
I'm sorry to hear that, I'm pretty much same age as you and have lived in shared house for 3 years - last year was the worst as there was a communal bathroom for 5 of us and I was flaring bad, the amount of mornings I'd be sat outside the bathroom in tears waiting for it to become free and had had an accident in the meantime! (those housemates really didn't get it, they tried to begin with and then just got fed up and gave up) this year I've moved into a different house with an ensuite just in case I flare again.

As for the infliximab, are you just on infliximab? Combining it with something like methotrexate (thats the combination I'm on) can extend its effect and makes it harder for your body to build antibodies to it. The combination of infliximab and methotrexate, in my case anyway, has made the effects of infusions last for 6months - 3 years. Obviously drugs work differently for different people but something like that might be worth trying?

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