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Remicade stopped working and moving to Humira

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Ulcerative Colitis
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Posted 7/2/2013 6:50 PM (GMT 0)
I'm 37 years old and I've had UC for about 3 years.  For the past 2 years I've been on Remicade which has been a life saver.  3 weeks ago I started flaring and had a colonoscopy.  When I first went on Remicade, I had 60cm flaring and I just had a colonoscopy that showed 30cm which is an improvement.

For the past 3 weeks, we've tried Pedisone packs that taper in a week which helped but Doc doesn't want me on Pred.  We tried Lialda, which I had taken before, but this time it made things worse.  I'm now on Uceris starting today (anybody know how long it takes to kick in?)

My Doc is starting me on Humira next week because my Promethus test showed that I've built antibodies to it.  Right now I'm having about 10-15 BMs per day, mostly diarrhea and bright red blood clots.  I'm not eating much because of cramps and the amount it makes me go.  Probably not good for me, but I'm still drinking because it seems to make the urgency go away at night allows me to sleep (a glass or 2 of wine or a vodka with club soda). 

When I took Remicade, I got almost instant remission.  I mean within 24 hours I was doing great.  What can I expect on Humira?  Also, how fast does Uceris 9mg usually take to help?  I'm trying to stay positive and healthy (still working out everyday) but I've lost energy and lots of weight. 

Also, should I be concerned about all of the bright red blood clots? 

Posted 7/2/2013 8:17 PM (GMT 0)
Uceris was pretty fast acting for me, unfortunately it wasn't enough even with Humira and Hydrocort enemas.

There are anti-spasm medications that help with the spasms; they are probably better for you than booze.

Urgency is usually helped by Steroid enemas because it treats the rectum topically and that's where most of the urgency will occur.

What dosage of Remicade are you on? 5 or 10 mgs/ kg? and how many weeks? Upping the dosage or time between infusions might work.

I tried Humira for 3+ months at all different dosages and it really never worked for me.... Remicade worked for me for 4+ yrs.

I just switched to a new biological this past week called Simponi and I feel so much better, it's almost like a switch went off and I feel good again.
Posted 7/2/2013 8:34 PM (GMT 0)
I've tried the enemas and I can't do them. I can't hold it for more than 5 seconds. I've tried canasa before and it didn't seem to do much good. The only thing that ever worked for me was the Remicade at 100 every 8 weeks and that stopped working after 2 years. Starting Humira next week.

When I went on Remicade 2 years ago, I was on a cocktail of Immuran, Predisone, Lialda, and Canasa and none of that worked. The Pred did it's job but we all know what a nightmare that is.

I may try a Rowasa enema. Anybody have any experience with them? Do you lay on your side and just push the stuff up? How do you hold it? Don't you want to just spray it out?

I'll cut back on the drinking to just one drink too. I've also gone gluten free since this flare 3 weeks ago. I primarily eat fish, eggs, rice, and chicken and 1 cup of coffee in the morning with a teaspoon of sugar and milk. I don't eat any other dairy really. I just want this to stop. Having blood pour out of your butt gets real tired quickly.

I just hope the Uceris works and the Humira kicks in as fast as the Remicade did. I wish my Promethus test didn't show antibodies.
Posted 7/3/2013 12:22 AM (GMT 0)
I was the same. Remicade started working fairly quickly for me and i think i slept through the night after my first dose which had been impossible, especially because of prednisone. Never really had bad side effects to it.

Humira was quite different. I developed c diff after i started it. I noticed a day after my loading dose how huge my gut looked. I usually dont have such bad bloating so i knew something was off. Then fevers and bloody diarrhea started. I thought maybe i was allergic to humira but the hospital confirmed c diff.

Im very hesistant to try another biologic.

I hope you have success with it.
Posted 7/3/2013 2:22 AM (GMT 0)
I've been on Humira for 10 months. Been doing pretty good. I take it weekly now. Everyother week wasn't enough. Good luck!!!!
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