remicade questions

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New Member

Date Joined Oct 2007
Total Posts : 13
   Posted 10/29/2007 10:21 AM (GMT -6)   
Hi all, I am new here, but not at all new to crohn's.  I was diagnosed on my birthday 7 years ago, and am having my second illeosecal resection in 2 years next month.  I also tested positive for having the HLA b27 gene linked to Ankylosing Spondyllitis.  Anywho, I have tried all the medicines but remicade.  (prednisone,asacol,entocort,imuran...yadayada)  for the second time since Cd diagnosis, my weight dropped below 80lbs this summer.  I have been able thru many many large mcdonald milk shakes to get my weight up to between 85 and 90lbs depending on how much water i am retaining due to chronic dehydration and malnutirion.  I had to get my weight up to have this surgery because as my weight dipps below 85 (apparently for me some magic number) my blood pressure falls to like 6o something over 40- my last endoscopy and colonoscopy I wasn't able to be sedated at all- that was fun- but basically, i am truely scared of the major side effects w/ cade, and I am not sure I am finding all the "negative stuff" I am worried about, and want to make the best educated decision that I can.  One of my many gasto's over the years will not even perscribe the stuff anymore.  My rheumy has had cancerous tumors, lymphoma, and crazy stuff w/ some of his other pts-and hates the med now.  My liver enzymes, creatinine and serum porteins are all out of whack- help help- tell me your stories! plus my husband's father and aunt both died of lupus- so the "lupus like/diagnosed lupus" stuff is terrifying him and I!

Veteran Member

Date Joined Aug 2003
Total Posts : 1017
   Posted 10/29/2007 1:15 PM (GMT -6)   
I have been on Cade for over 6 years now. It has given me a life. There have been times when I needed to up the dose to control a flare, but overall I would have to say - go for it.
Red (Lee Ann)
 Happy Bunny 
      When life gives you lemons, squirt juice in your enemy's eyes.

Regular Member

Date Joined Jul 2007
Total Posts : 137
   Posted 10/29/2007 1:53 PM (GMT -6)   
I was on it for 9 months with no problems until I just became non responsive to it and had to switch to humira. My doc says he has been trying to switch people over to the humira because he is finding more people that are non responsive or having bad reactions. But for 9 months I felt pretty good!

Dx CD 2003 but probably had it 10 years prior

Dx Primary Sclerossing Cholangitis 2006

GB out '95, Appendix out '96, Kidney stent '02/stone removal '02, Resection '04, fistulectomy '06 2x, tubal '05

Currently on 100mg 6mp-50 mg,  and Remicade every 8 weeks, Ambien, predsnisone, humira 

Regular Member

Date Joined Oct 2007
Total Posts : 106
   Posted 10/29/2007 6:33 PM (GMT -6)   
Im about to switch to Humira or have resect surgery. It's not helping me that much.
DX: Crohns in March 2007
Meds: Remicade

Regular Member

Date Joined Sep 2006
Total Posts : 181
   Posted 10/29/2007 9:27 PM (GMT -6)   
I look at it as quality of life over quantity of life. If remicade kills me at least I am living life to the fullest now. Prior to remicade I could barely leave my house because I was so ill. Remicade gave me life back and 20 lbs back :) The decesion is yours but my expierence has been wonderful!
want_2_be_well AKA Mel
32 year old Female
Diagnosed with CD 2006, had been ill off and on for over 10 years.
Also have seasonal allergies, milk allergy, and asthma.
CD Meds: Remicade every 8 weeks, Imuran 50 mg, Pentasa

Veteran Member

Date Joined Oct 2004
Total Posts : 3042
   Posted 10/30/2007 6:23 AM (GMT -6)   
Hi I have been on Remicade for over 2 years and have no-side effects from the Remicade. I am
enjoying being in remission.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007

Regular Member

Date Joined Mar 2006
Total Posts : 494
   Posted 10/30/2007 12:46 PM (GMT -6)   
I have had all sorts of nasty side effects on Remicade. I think I have had enough and will be telling my doctor the same thing.
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Prograf and Remicade.

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