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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Needing advice on Remicade


10-29-2014, 12:34 AM   #1
Hannah_26
 
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Location: Iowa
Needing advice on Remicade

Hello everyone

I've been getting remicade infusions for 4 years now. I think it has helped some but I still experience all of the symptoms that I always have. I was wondering if this was normal or if I should be switching to something else, and if so what works? I know this is a question you should typically ask your GI but the one I am seeing right now doesn't seem to be very helpful, although I believe she has good intentions.

Another thing that I wanted to bring up is ever since beginning remicade I've been hospitalized with all kinds of weird things that wouldn't usually happen. It also seems like it takes me forever to get better after being sick, and then the next thing pops up. I know that to a certain extent some of this is normal because of my suppressed immune system but is it possible that my immune system is too suppressed? I also never get fevers no matter how sick I am and I've had some pretty weird stuff. I was wondering if anyone else experiences this and if so how do you manage it?

Any advice would be much appreciated
10-29-2014, 06:34 PM   #2
tzvia
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I haven't taken Remicade, but I know that Entyvio is a new biologic drug out there. It also suppresses the immune system, but it does so in a different way than Remicade and Humira do, so I'm not sure if that would help you? Might be good to have a conversation with your Dr about it, and might also be good to find a new Dr, since you don't seem to be happy with the one you have. I actually switched Dr's about 2 mo ago and I SOOO much happier with me new GI Dr.

Also, have you been getting your blood work looked at? When on Remicade, there are certain blood tests that should be done regularly, if I'm not mistaken.
__________________
Diagnosed with Crohn's in 2007, symptoms since 2000.
Hospitalized with bowel obstruction 8/2012
Ileocecectomy with 9" removed 10/2014


Current meds: Entocort, Questran
Past meds: Prednisone, Humira

10-29-2014, 10:27 PM   #3
Hannah_26
 
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I have an appointment with a new GI on Tuesday so I'm hoping he can help me sort everything out. I will definitely bring up Entyvio and see what his views on it are I do have blood work drawn before every infusion and I have never seen the results so I assume everything is ok with them.

Thanks for the advice!
10-30-2014, 01:47 AM   #4
ZombiePenguin
 
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I get remicade every month and experience the same thing when my 6mp levels are down. When it was increased the remicade worked better for me. On its own I'm not so sure how well it holds back the illness. I have UC and for about 6 months it did hardly anything for me except make me tired until I was bumped from 50 to 75mg of 6mp. Entyvio? That sounds really interesting I think I need to look into it myself. At this rate, anything that works I'll try it haha. Nice to meet you and best of luck to you both!
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