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Crohn's Disease Forum » Your Story » HELP!! crohns patient taking remicade.... NOT WORKING


07-31-2015, 01:44 PM   #1
Misstrishx
 
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HELP!! crohns patient taking remicade.... NOT WORKING

Hello everyone!
I have been taking Remicade for over a year now (since Jan. it's been bumped up to 10mg/kg). And now I get it every 5 weeks. I got my infusion 2.5 weeks ago and I feel like I have no medication in my system. Going to the bathroom 10-15+ times a day, horrible stomach pains, feeling like I want to throw up every time I go to the bathroom also.
I havnt been eating bad at all, and I am curious if anyone has felt like this?? Does this mean remicade isn't working for me anymore? Has anyone gone from remicade to humira and feel normal again?
I am desperate and my appt with my GI is all the way in Sept. Bc he can't take me earlier. Any comments/suggestions would greatly help!! Thank you
07-31-2015, 04:26 PM   #2
Clash
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It definitely sounds as if Remicade isn't working for you. Has it ever worked for you or have you dealt with flares the entire time you've been on it?

It could be that you body has created antibodies to it so I'd ask to be tested for that. Also you could be a primary non responder meaning for what ever reason you are responding to the remicade.

Could you call and get put on the cancellation list at the GI? I would also call the GI nurse and update her frequently to your symptoms.
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Clash
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
07-31-2015, 07:58 PM   #3
Misstrishx
 
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Yeah I feel like that what is happening. I'm getting 10mg/kg every 5 weeks and it's only been 2.5 weeks since my infusion and I feel as if I barely got any medication.
Unfortunately I spoke with the nurse today and the soonest I can see my GI is in 3 weeks due to him being on vacation. That day I am going to discuss all my problems with my doctor and they will fill out the paperwork for Humira.
I've been on remicade since April of last year and half of my colon is still inflamed! I am to a point where I am fed up and just don't know what to do. I eat healthy, low fat no fried foods no fast food and I feel as if nothing is helping. I'm still not in remission!
08-01-2015, 07:08 AM   #4
Clash
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My son was on Remicade from age 15 to 17. He had immediate results symptom wise. After loading doses we started having to tweak the schedules and up the dose. He ended up on high dose Remicade 15mg/kg every 5 weeks and methotrexate. He was asymptomatic but there was an area at his TI the remicade just couldn't seem to heal. Eventually, we opted for surgery, started Remicade back, developed antibodies and moved to humira.

I'm hoping humira will eventually keep his CD at bay.
08-01-2015, 10:18 AM   #5
Misstrishx
 
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Yes I had pretty good results with remicade also but I was never in remission. The first half of my colon is healed but the other half is still severe. I am getting my last dose of remicade August 17. And then will start Humira after that. I am hoping Humira will work and get me to remission! *praying*
08-01-2015, 03:04 PM   #6
wildbill_52280
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maybe you also have c. diff? ask doc about it. it could give you access to fecal transplants which coudl also help IBD but not approved yet by FDA for IBD.

Also try eliminating lactose and sucrose, this kept my D in check for years.
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08-01-2015, 03:10 PM   #7
Misstrishx
 
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maybe you also have c. diff? ask doc about it. it could give you access to fecal transplants which coudl also help IBD but not approved yet by FDA for IBD.

Also try eliminating lactose and sucrose, this kept my D in check for years.
No no I don't have c.diff lol I was extremely healthy and fit prior to crohns, so getting diagnosed with crohns was a huge blow and shock. I am a vegan so I do not have lactose and I actually found I need a good amount of fruits/natura sugar bc I feel very weak without that.
Thank you!!
08-02-2015, 12:07 AM   #8
Lady Organic
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I eat healthy, low fat no fried foods no fast food and I feel as if nothing is helping.
have you tried any specific diet? take a look at IBD-AID diet in my signature if interested in trying a dietary option. good luck.
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
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