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Now Remicade is not working. What's next?

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Ulcerative Colitis
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Posted 1/17/2009 9:42 PM (GMT 0)
This UC thing is really starting to get old.  I've had about 6 infusion of Remicade and it was doing okay for awhile.  It wasn't perfect but I could definitely live with it.  Then I started to have problems and we tried the max dose.  This still didn't help pull me out of it.  I spoke with the doc on the phone, and he wanted to give it another week and then start talking about other options.  Not to mention another colonoscopy just to see if there is an infction.  I think its a good idea, but it will be my 4th one since I was diagnosed 1 year ago (and never fully out of the flare). 

I've read a little about Humera.  Is there anything else out there besides a clinical trial once Remicade stops working?  I'm just not ready to loose my colon yet.

thanks.

Posted 1/17/2009 9:51 PM (GMT 0)
After Humira that's about it. Look into the surgery -- I know it's frightening sounding but all the research I did it seems most people who do it only regret not having done it sooner. Go to the Ostemy board and read through the posts. There may even be ostemy support groups available through your local hospital so you can talk to people who have had it done and see how their quality of life is.

That said, it took me quite a long time to achieve remission even with Remicade, so if it's any sort of improvement at all you may want to stick with it a bit longer.
Posted 1/18/2009 5:50 AM (GMT 0)
I'm not having luck with Remicade either. I cannot go up on the prednisone and wait for the Remicade to possibly work b/c my side effects involve staph infections and very painful abscesses. I've been in a constant flare since June 2008 and never have had remission in the 2 years I've had active UC.

I know the surgery sounds scary. My husband I always joked about the 'cure' for this disease and that it would be 'someday'...little did we know that day is today. Well, within the next few weeks at least. Because this flare has been going on since June I'm having a very difficult time masking my struggles from my family. They've caught on to my exhaustion and I'm having a difficult time hiding the pain. So, they're kind of wigging out right now...which makes me feel bad b/c I've been much worse than what I am now, and they're making a big deal out nothing really...well, for me it's nothing b/c like I said it's been a whole hell of a lot worse.

Anyway, we are having the surgery b/c I want to get back to my life. I'm tired of the exhaustion, I'm tired of the staph infections and constant open wound care, and I'm so tired of my son, husband and family being affected by my struggles and my issues. It's not fair for them, and it's not fair for me. My GI suggested the surgery a little over a month ago, and at first I felt it was very premature and unrealistic. Then I thought about it, and my husband and I did some research, weighed our options, spoke with our family and decided to go with it.

I am so sorry you're struggling with the Remicade. I always got my hopes up with each infusion, and either immediately after or soon after my bubble was broken b/c they did not work. *sigh*

I do hope you find the right combination and treatments for you. Many people on this forum find luck with nutrition and diet changes...many people go to great lengths to retain or gain remission before resulting to surgery. I'm sure you'll find something that works well for you and your family!!!

: ) Robin
Posted 1/19/2009 8:16 PM (GMT 0)
Refaxamin (sp.?) is an oral antibiotic that acts locally in the colon rather than systemically and which in some UC patients does trigger a quick remission. Like remicade it is something that you have to keep on taking. If Remi fails me (it certainly looks like it might right now- just a weak effect after 3 infusions) and my insurance covers them, I would probably try Humira and then Refaxamin before resorting to surgery. Well, I'm not quite sure. Since I sort of know none of these things would make sense to take for years (in my opinion), my only hope would be that they would somehow trigger a long-term remission after taking them for a year or two- and since the odds are against staying in remission without a maintenance drug, I am thinking about skipping straight to surgery if remi fails. But it is one more option. 
Posted 1/19/2009 9:03 PM (GMT 0)
Probiotic,

What was different about your life during the 10 year remission; less stress, different work etc etc?

Thanks

Posted 1/19/2009 9:09 PM (GMT 0)
And the bad news on Humira is that, since it isn't yet FDA-approved for UC, your insurance company may or may not pay for it. If you have a policy that states they do not cover "experimental" treatments, it probably won't. Be sure your doc gets approval before starting it.
Posted 1/19/2009 9:13 PM (GMT 0)

Any idea how close it is to FDA approval?

Thanks

Judilyn said...
And the bad news on Humira is that, since it isn't yet FDA-approved for UC, your insurance company may or may not pay for it. If you have a policy that states they do not cover "experimental" treatments, it probably won't. Be sure your doc gets approval before starting it.

Posted 1/19/2009 11:46 PM (GMT 0)
I don't know; I've been trying to find info on the internet without luck. I plan to ask my GI the next time I see her. I know it's been in the final phase of testing for a while.
Posted 1/20/2009 3:00 AM (GMT 0)
Thanks. I'll check with mine as I have to speak with her tomorrow.
Posted 1/20/2009 3:08 AM (GMT 0)

bbc said...
Probiotic,

What was different about your life during the 10 year remission; less stress, different work etc etc?

Thanks

No logical explanation-- activity tapered off in fits and spurts (often two steps forward one step back); prednisone (including ups not just tapering) aided the tapering off of disease activity and then, eventually I was completely med free (due to allergic reactions to all the maintenance drugs i..e to 5ASA meds).  Stress was just as high at times... really no solid explanation.  As for diet, I could eat anything I wanted in that remission, pretty much, whereas now I have to be very careful with avoiding sugars and refined carbs.

Posted 1/20/2009 4:22 AM (GMT 0)
Almost sounds like the pred may have kicked it into full and long term remission
Posted 1/20/2009 4:37 PM (GMT 0)
Nothing worked for me quite as well as it should've so after being dx in March, I had temp ileostomy surgery in Nov. and its the BEST thing i've ever done! :-) It sounds really scary at first and I cried my eyes out right before being knocked out to have it done. But when I woke up, I felt so much healthier! I have no more pain (unless i eat something too fast or dont chew it up good enough) and the best thing for me is that i dont have to take anymore pills or shots. The pills are what made me feel so crappy! So if you do decide to get surgery, soon or 10 years from now, I promise you..it will be the best thing you've ever done!

It rids of your UC! =] How could it get any better than that yeah

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