What to do when Remicade stops working?

[bwightman]

Hi everyone,

It's been a year or two since I've perused the forum, mostly because I've felt pretty good after starting Remicade in 2009. I did have a flare-up last spring/summer that was calmed down by a course of Prednisone and both upping the dose of Remi and reducing the period between doses to 6 weeks. Mostly I feel pretty good, but I don't think my symptoms ever returned to the pre-flare level.

Fast forward to the beginning of the month, when I had a scheduled colonoscopy...even though I was on the good drugs, I ended up waking up during the procedure yelling in pain. It turns out my large intestine is still inflamed to the point where the doctor couldn't scope it without causing me a lot of pain. His explanation was that the Remicade is basically preventing the inflammation from getting any worse, but not really doing anything to heal it.

So I have a follow-up with him tomorrow and I'm wondering what the game plan should be. I've been on 5ASAs, Humira, and Remicade. Would Cimzia plus something like Imuran or 6mp be a logical next step? Has anyone been in a similar situation? I'd really like to avoid the Prednisone route if at all possible....it turns me into a crazy maniac!

Thanks for the feedback!

Beth

 

[xJillx]

Beth, I don't have any answers for you, but I was wondering how you appointment went? Do you have a new plan set? I hope it went well. Keep us posted!

 

[Fog Ducker]

Wow! That actually scares me a bit! Ive been on remicade 3 years and havent had a scope since! I've been feeling great though. How were you feeling?

I hope the appointment went well, and you start to feel better!

 

[bwightman]

So good news....my first dose of Cimzia will be arriving tomorrow! My doctor actually gave me four options for replacing the Remicade, one of which is the Cimzia/Imuran combo that I chose to go with. It can't come a moment too soon either, since I've been feeling pretty crummy all weekend. Hopefully I start seeing an improvement soon....I've got a vacation scheduled for March 19!

Brian, I wasn't feeling so great before the scope. At this point, I'm only getting about 10 days of effectiveness from the Remicade before things start to head downhill again, even though I'm on a double dose and getting it every 6 weeks. For my next colonoscopy, my doctor assured me I'll be put under anaesthesia, which is fine with me!

I'm trying to keep a positive attitude about this whole thing and I'm really hoping the Cimzia/Imuran combo will do the trick....I haven't truly been in remission since May 2010 and I'd like to get back there soon...

 

[xJillx]

I hope Cimzia/Imuran do the trick for you Beth! Good luck!!

 

[ThanksP]

Good luck to you! I've been on Cimzia for a year now, and started with double doses and 6MP (I guess similar to Imuran) a few weeks ago. Hope the Cimzia kicks in as quickly as it did for me...just a few days.

 

[lamor32twigs]

I have currently been on the cimzia/imuran combo for a little over a year.
I have to say it never has worked as well as remicade did for me, but it does have some effectiveness.
Hopefully you have great success with it.

 

[bwightman]

Thanks everyone! My first dose of Cimzia should arrive today, and I'm just waiting on the home care nurse to call about scheduling an appointment so I can learn how to inject myself. I was warned by my GI that I probably won't see as dramatic an improvement as I did when starting Remicade, but the combination of the two drugs should hopefully help things improve more than with just Cimzia alone.

This forum has been such a help for me....I tend to come here whenever I'm feeling bad or another drug has failed and I'm worried about other options. Everyone here is so supportive and it's such an inspiration to read other stories and know that I'm not in this alone. I hate this disease...I saw my dad suffering through it throughout my entire childhood, and then I was diagnosed on my 28th birthday after spending a week in the hospital. That was only 3 years ago, and how my life has changed since!