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How did you know when Remicade stopped working?

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Posted 8/18/2009 5:53 PM (GMT 0)
Hi there,

For those of you who were on Remicade and it stopped working for you - how did you know? Was it a return of symptoms or was there a more conclusive (i.e. a bloodtest) way of knowing that it wasn't working for you?

Thank you,

CC

Posted 8/18/2009 6:21 PM (GMT 0)
For me, the regular 5 mg/kg, every 8 week schedule stopped working pretty fast- I'd get to week 4 & be absolutely miserable, lots of blood, lots of D, up 4-6x per night, etc. Then we increased the dose to 10mgs/kg, every 6 weeks- that has been holding me steady, somewhat. I still get symptomatic by week 5, but it's manageable- on the 6 week dosing schedule I get 4-5 really good weeks, & a week or so of trouble. I have had the prometheus testing done, but that was just to see how I was metabolizing the Imuran- I think though, they do a REmicade antibody test also. My GI never recommended I get the labs done- the increase in symptoms directly correlate to my dosing schedule, so why bother with the labs? Plus, every other GI/surgeon I've spoken with has agreed, that it's slowly losing efficacy. Not one has suggested testing for the antibodies. I'm pretty sure that's how Remicade is supposed to work- after a while, the majority of people build up immunities to it. Are you experiencing this? Sorry to hear it- it's a bummer, eh?

Posted 8/18/2009 7:14 PM (GMT 0)
Yes, after this last dose, I started having symptoms even the day afterwards. I was able to stop the symptoms but now they've come back worse this week, and it's week 4 of my 6-week cycle. I don't know if I should wait it out until Sept 2nd or call my GI right away. Gawd I hate this disease, I can't seem to catch a break...
Posted 8/18/2009 7:56 PM (GMT 0)
I hear that! I feel the same way.... Are you on the 10mgs/kg dose? If not, I'd call my GI & ask about upping your dose. That's always an option. My GI seems to be under the impression that Humira will be covered by most insurers if all else fails, including Remicade- we haven't tested that theory yet, but it'll probably happpen! You could ask about trying to get on Humira. Are you going to get your period? When I am, all bets are off, I may as well be on no meds at all! Have you been on Remicade a long time now? So frustrating, especially when the drug had worked well for a while, then just tapers off & off & off.... What does your GI say comes next? Is it the dreaded "S" word???
Posted 8/18/2009 9:06 PM (GMT 0)
Oh, you know!!

I've been on Remicade for more than two years, for the last year every six weeks, which stops being effective about 4 1/2 to 5 weeks after the infusion. I'm going to9 have j-pouch surgery over the winter.

Meesh
Posted 8/18/2009 10:54 PM (GMT 0)
I had been beginning to some symptoms of a flare, so my doc moved my infusion up. Then I went into an awful flare literally days after that infusion. I was on the 5 mgs per kg dose. My doctor did a blood test (Promethus) at the 4 week mark after my last infusion. I had more than the expected amount of the Remi in my blood and had continued to flare even with adding Asacol (I wasn't on any meds other than Remi). I had no antibodies. With all 3 of those facts, they determined that Remi wasn't working and took me off of it. :(

Jen
Posted 8/19/2009 12:47 AM (GMT 0)
OK, so there is a scientific way of knowing - so if my dr does a blood test at 4 weeks and shows that there's enough Remi in my system to fight the flare, yet I'm not, then we know the Remi isn't working. I hate how so much of my treatment depends on the subjective info I give my doc - blood this day, D that day, etc, rather than on something more substantial. Yes, I am menstruating... I do think there's a connection there, especially given that I had the worst flare of my life right after conceiving my child. Have any ladies ever considered the birth control where you only menstruate once a year? I wonder if it's something to try because then the hormones wouldn't be a factor. I'm desperate... I don't want to do the surgery quite yet but I don't think Remi is going to work for me much longer. I haven't tried Humira yet and I could ask my doc to up my dose to 10mg... The scary thing is that I react to Remi so I'm nervous about increasing the dose. I react harsh - I can't breathe...

Thank you for your replies. I feel so lost with this disease some days.
Posted 8/19/2009 1:34 AM (GMT 0)
I told my OBGYN that my period made my UC worse. I use the Nuvaring. She told me that I could leave it in for 4 weeks instead of the usual 3 weeks and then take it out and put a new one right back in. That way you don't have a period. She said that birth control is even more effective than the usual "99.8%" when done that way (if you are on the pill, skip that week of fake pills and go right into a new pack with real pills in it). I'd ask the doc that prescribes your birth control what they think!

Of course I've taken her up on that offer and now on the 3rd month with no breaks from the "ring". So far, so good! :)

Jen
Posted 8/19/2009 2:25 AM (GMT 0)
I started Remi in December '08. It started working about three days later, but the next few doses it seemed to lose its effect. In May, they upped me to 10mg/kilo and I don't know if that was it or what, but I had a near-fatal blood loss (according to the hematologist) that night, landed in the hospital, and ended up with a colectomy w/ileostomy five days later. My hemoglobin dropped from 8.4 to 5.3 in two days. Since the surgery, it's staying in the 12s...can't remember how long it's been since I've been there!
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