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When will Remicade work?

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Ulcerative Colitis
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Posted 9/9/2009 1:14 PM (GMT 0)
All,

I am getting so discouraged.  I have been flaring since Oct 08 and its gotten progressively worse.  I have lost 20 lbs now.  As much as I didn't want to go to Remi that was really my only option as nothing is getting me out of my flare.  I have had 3 treatments of Remi so far and I have not seen any differance.  Can the people on Remi remember how long it took them to see improvements or is 3 the number and should I accept that this may not work for me.

Thanks for the support!

Blue5

30 years old

UC since Sept 07 

Posted 9/9/2009 1:32 PM (GMT 0)
Hi Blue5, and welcome to HealingWell. I know, it can be discouraging, but some say it's taken up to three or four infusions before they saw any improvement. Are you taking any other meds besides the Remi? I've also known some folks that have added Rowasa enema's to help them get more into remission. I say give it another try, and if you don't show any improvement, maybe you will be eligible for Humira? I know, another med, but sometimes you have to try several meds/combos before you find the right one for you. Or talk to your doc, maybe they can increase the Remi dosage or try it every 6 weeks. My nurse told me last week that some of her patients come in every 4 weeks, and that was the only way they found relief. It's so different for everyone! Take care...when is your next infusion?

Posted 9/9/2009 3:46 PM (GMT 0)
My next infusion is not until Oct 27th. I hate this feeling and its embaressign constantly going to the bathroom at work.
Posted 9/9/2009 4:59 PM (GMT 0)
Wow, that's a way off. So you must have just had an infusion? I think I would call your GI right away and let him know the difficulty you are having right now. I know how embarrassing it is with the bathroom trips at work. I remember one GI telling me this and it's a good thing to keep in mind....he said, "When a patient comes for a visit, my first question to them is, how is your quality of life?" He said that was more important to him so he could adjust the meds etc. so they could live more comfortably. So, keep that in mind as you call your doc...it's your quality of life that is being affected. Take care.

Posted 9/9/2009 9:57 PM (GMT 0)
It took about 4 infusions until I started to notice any improvement and about 6 to start making semi normal stool Hang in there, it's not uncommon for it to take awhile.

You may want to consider a infusion every 6 weeks instead of 8. Worked for me although now that I'm better I may go back to 8...will see what the GI says in a few weeks.
Posted 9/9/2009 10:02 PM (GMT 0)
My doctor just took me off remicade after 3 infusions with no change for the better. We went back to prednisone and I'm not sure where I'll go after that.
I was so depressed that remicade didn't work for me like it does some others on here. So I know how you're feeling. Just one day at a time. What else can we do? Hang in there.
I would definitely call your GI and discuss. Maybe he has another treatment plan up his sleeve.
Posted 9/10/2009 2:10 AM (GMT 0)
Don't lose hope yet! It took me 5 infusions plus the right combo of rectal meds to reach remission and now my bowels are great. Definitely looking into adding rectal meds b/c the end is typically the most difficult to heal.
Posted 9/10/2009 2:20 AM (GMT 0)
I don't think it is guaranteed to help. I have seen a lot of people here who have had success but not everyone. You can always opt for Humira as some have mentioned or try some other 5ASAs combined with the remicade. I hope you find a solution. This disease is so frustrating. I always feel like I am teetering on the edge of a flare but I manage to stay out of one with the meds I use. It does sound like you should give it another couple tries before you give up but maybe ask your GI about adding some rectal meds or what the options are.
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