HealingWell
Search Close Search
☰

Anyone stopped and re-started Remicade?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/1/2010 3:16 PM (GMT 0)
After taking Remi for a full year, I went off the drug in March of '09 to conceive (right away, as it turned out!). I gave birth to a healthy, beautiful baby girl in November (she came one month early, but she was big! That turned out to be a favor :) and was doing great... until late January, when I started flaring again. I had been taking Asacol and Canasa suppositories, which seemed to keep small flares at bay, but things got increasingly worse.

Fast forward to now: I'm flaring every few hours, and took a short course of steroids which did not, sadly, turn out to be the magic bullet it once was. I'm most likely going to go back on Remi, but I know there's a risk of having developed antibodies to the drug and having an allergic reaction.

Have any of you ever re-started Remi? Was it less effective? Did you have a reaction? I'd really like to flare less so I can be a more present mama.

Thanks,

Jones

_________
Dx'ed with UC in 2003. Hospitalized in '07 and '08, acupuncture, herbs, fish pills, Asacol, Canasa. Went off 6MP and Remi, now considering a restart of Remi.
Posted 4/1/2010 3:29 PM (GMT 0)
Jones,   I stopped Remicade due to reduced effectiveness.   My doctor was hesitant to restart Remicade after Humira proved ineffective.   I requested that the levels of HACA (Human Anti-Chimeric Antibodies) be determine prior to making a decision to restart Remicade instead of just going with the generally accepted practice of once you stop you cannot go back.   Well the HACA levels were low and I restarted Remicade and have had a great response ever since.     If your antibody levels are within the acceptable range then you can restart.   You can Google “Serum Infliximab/HACA Measurement Catalog # 3130” for more info.   Of course always rely on your physician for medical advice. .
Posted 4/1/2010 4:45 PM (GMT 0)
I had the three-dose induction before it was FDA approved for UC, then had to stop because my insurance wouldn't cover any more infusions. When it was approved, I went back on and have been in remission for four years now. I think it's definitely worth a try.
Posted 4/1/2010 8:40 PM (GMT 0)
I originally went on Remicade about 6 years ago, went into Remission and then moved, changed jobs, and had an insurance lapse, which caused me to stop the infusions.

After nearly 4 years of remission, I had a horrible flare and was on the brink of surgery.  I went on Remicade again and it took hold, but only after upping the dose to 10mg and scheduling infusions for every 6 weeks.  I've been in remission ever since and often wonder if I would still be on 6mg every 8 weeks had I not been forced to stop originally. 

I have no side effects since going back on and couldn't feel any better.  If you're already committed to Remi, then I personally give it a shot.  Assuming your doc gives you the green light.

Posted 4/1/2010 10:59 PM (GMT 0)
Thank you both so much for this helpful advice (and Judy, your Camus quote is so, so beautiful). I'm very grateful.

Jones
Posted 4/17/2010 2:22 PM (GMT 0)
I just started another post about this this morning.  I am restarting Remi Thursday 4-22 after nearly 14 months off of it.  I will let you know how it goes.  I am pretty nervous, hopefully I will repond well like I did before when I was on it.  Fingers crossed...and praying!
✚ New Topic ✚ Reply