Remicade over time

[copeland]

I've been on Remicade with good to fair results for more than eight years now.

The way it typically goes is: I'll feel good right after the infusion, and the feeling slowly fades over time until I feel bad (diarrhea, pain, lethargy, fever, etc.) again. Then I get another infusion and feel good again.

What I can't figure out is what causes me to feel good for varying amounts of time after the infusion. Sometimes, I make it the whole eight weeks feeling good, and sometimes I feel bad after only two or three weeks. Can anyone shed any light on this?

Also, as I get older/have been on Remicade longer, it seems that the time the Remicade lasts is trending down, that is to say there is less time that I'm feeling good. Last infusion cycle, I was pretty miserably sick for more than a month. Can Remicade lose its effectiveness over time (in my case over an eight-year period?)

Thanks,

-Dan

 

[Clash]

copeland, sorry the remicade isn't working as well for you anymore. Remicade does sometimes out last it's effectiveness. Have you always been at 8 weeks? My son was just moved to every 5 weeks as that is when the ulcers, fevers, joint pain start showing up. But we are just getting started on remicade and are only 2 infusions out from the loading doses. The GI hopes to moves the doses back out and at the last infusion he did up the dose. Are you at the maximum dose? Remicade has for many run it's course after a few years and 8 years it a great run, maybe you should speak to your GI about adding a combo to the med such as methotrexate or switching you to Humira? Hope you get everything straightened out soon!

 

[Becky]

I have been on remicade for 5 yrs and my experience is similar to yours. I started at 8 wks and then after a few years they bumped me to every 6wks. Then I had to go on 6mp with the remicade. I am 2 wks from my next infusion and I am having symptoms. Sometimes it last the whole time and sometimes it doesnt. i have no idea why but just wanted to let you know you are not alone

 

[sickofcrohns]

Hi there,

I've been on Remicade for 8.5 years and yes, it does seem to wear off more quickly over time. I've had a dosage increase (5mg/kg --> 7 mg/kg) and then an interval decrease (every 7 weeks instead of every 8). By week 5 I'm always feeling symptoms, and by week 7 I'm pretty much too fatigued to do anything requiring concentration (though it does vary from treatment cycle to treatment cycle).But it's better than being out of it for a month each time, which was starting to happen every 8 weeks at the lower dose.

Talk to your doctor about more frequent doses and/or increased doses. If it gives you a week or two of extra productivity and life per treatment cycle, it will be well worth it. :thumright: