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jsully
New Member


Date Joined Jan 2005
Total Posts : 4
   Posted 3/9/2010 6:52 PM (GMT -7)   
Have had Crohn's since I was 11 years old.  I am now 39.  Had a re-section when I was 21 and am now battling the disease in my colon.  Have been advised to start Remicade, am scared of being sick all the time on it though.  Please tell me some good stories about your experience with Remicade.  Bad ones are easy to come by it seems........js

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 3/9/2010 7:23 PM (GMT -7)   
Hey there. Welcome to the forum. Sorry you're not flaring right now. Remicade has been a wonder drug for my husband. 2 years ago, he landed in the hospital with c-diff and crohn's, and spent 45 days in the hospital, and lost about 48 lbs, and it was absolutely horrible. Even 120mgs of solumedrol didn't fix him up. As a last resort before surgery, the doc gave him Remicade. 2 weeks later, he was home, eating solid food again. And remicade has kept his crohn's in remission since (he's had a few other problems unrelated to remicade, and I think remicade has actually helped with those as well).

He does have an infusion reaction to the remicade - he gets flu like symptoms, and his joints hurt - so they pre-treat him with 40mgs of solumedrol, and he takes tylenol for a day after his remicade infusion, and just takes it easy until he gets to feeling better. But other than that, no problems on the remicade, and it's now almost 2 years since he first started taking remicade. In fact, he just finished his physical, and absolutely all the numbers were fine.

Remicade gave us back our life - yes it was and is very scary with the black box label etc., but it is also what has enabled us to live the last 2 years of our lives. So far, the gamble we took on remicade has worked out very well for us. I hope it does the same for you. There have been a lot of success stories for remicade (like us), and I hope you'll be one of them.

Good luck!

(((Hugs)))
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 3/9/2010 7:50 PM (GMT -7)   
"being sick all the time on it though" <<<your question implies you have taken remicade previously, and getting or feeling sick while having taken it. ?
The treatment itself makes you take time to have the infusion... beyond the time that a typical doctor office visit would take. This time permits relaxation. If you were given a plain saline solution do you think you would benefit. Yes, because most crohns patients are extremely active and the debilating smtpoms from crohns makes them strive further in their jobs and lifestyles to try to keep what they have. This, as a result, ends up leaving even less time to actually address the disease with less stress. so remicade at the time when it first came out was a 2 hour or so therapy in a doctors office away from stress.

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 3/10/2010 12:04 AM (GMT -7)   
Had 19 iv's over almost 3 years no side effects. Works very well to control crohn's arthritis but not totally. I'd recommend trying it to see how well it works for you.


Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


jsully
New Member


Date Joined Jan 2005
Total Posts : 4
   Posted 3/12/2010 7:12 AM (GMT -7)   
I'm glad to hear of your successful experiences with Remicade.  I'm just so scared that I won't be able to leave my house for fear of picking up something while I'm on it????  That is the one thing holding me back.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 3/12/2010 11:25 AM (GMT -7)   
My husband has had zero respiratory infections on Remicade (knock on wood) - he's been on remicade for 2 years now. The only infections he's got while on remicade is a stomach flu recently. But the doctors and nurses at the ER were saying that they'd seen over 40 cases of stomach flu in the ER in about 3 days (and my husband was just one of the lot).

My husband is healthy and fine on remicade. He practices good hygiene, washes his hands frequently, and carries hand sanitizer with him, stays away from sick people, warns sick people to stay away from hi, and he's fine.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 3/12/2010 11:34 AM (GMT -7)   
I worked in a hospital for 2 years while on Remicade. I can't say I never picked up a bug during the time, but I didn't pick up any more than my coworkers did. I did find that it took my body longer to get rid of bugs I picked up, but it diminished my crohn's symptoms enough for it to be worth it to me.

I'm on Humira now, and I get sinus infections a lot because of it (they're actually listed as a side effect) but I wouldn't go back to pre-Humira or Remicade days!
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D, Coumadin


jsully
New Member


Date Joined Jan 2005
Total Posts : 4
   Posted 3/12/2010 12:42 PM (GMT -7)   
That is all very encouraging to me!!!  Thanks so much for your replies!  I'm trying to get it under control in the next month or so, but if not I will be willing to try the Remicade now.  THANK YOU!!!
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