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jj squared
New Member


Date Joined Dec 2007
Total Posts : 2
   Posted 12/27/2007 7:36 PM (GMT -7)   
hi everyone, :-)
 
                    new to this site im diagnosed with uc,  bleeding pretty bad real bad, doc  gave me three options .
remicade ( scares me)  , surgery ( j box)  , experimental drug.  dont know what to do  .   on azathiropine now. not working. can  someone  share some experiences about remicade, i would really appreciate it.
 
 
                                                      thankyou jj squared

princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/27/2007 11:24 PM (GMT -7)   
I am assuming you meant jpouch? I would try remicade before surgery. This is coming from someone who just got over a horrible reaction to the drug. I had 2 good years on it. The last 2 infusions afterwards were hell, I will admit that. But I should have listened to my body the last infusion when I seemed to have a reaction and not taken it again. Remicade helped turn a 1 inch ulcer to 1/4 inch within the first 3 months! Unfortunatley, the ulcer is still that size now, like 2 years later. But I didnt have any problems with the Remicade till I got a high dose and more often. I used to feel great after getting it and had the best bms of my life on it after a few months. What about Humira instead of Remicade, is that an option? I hear it has less risk of reactions. I guess it depends. I don't know how long youve had UC and how many meds you have tried. That makes a difference imo about getting surgery. I personally have decided if Humira doesn't work for me then I will get the illeostomy not the j pouch. I have gone through enough and dont want pouchitis or more surgeries or perianal abcesses which my GI says I am at risk for. I guess looking back I wish I would have gotten the illeostomy 3 years ago or sooner. But that is because I haven't had the surgery yet and it sounds really good right now. I would take a chance and try Remicade or Humira first. Some people go into remission on those. And maybe in the meantime some new better drugs will come out. I guess it all depends on your exact situation and what you want to do.
Adrienne,27
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks ( had a reaction will start Humira in 6 weeks) Lomotil, Darvocet, Clorazepate


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 12/27/2007 11:31 PM (GMT -7)   
Welcome JJSquared to HealingWell! I've been on Remi for 2 1/2 years, and haven't had any problems so far. When you start the infusions, they will take about 3 hours as they infuse slowly and watch to make sure there are no reactions. Since I've been on it for so long, my infusions only take an hour, and then I'm outta' there! :-) Today I had an infusion, then had lunch with some friends, came home and cleaned the house a bit, had dinner with my boyfriend -- so it really has given me my life back. I'm very thankful for the Remicade. I hike, bike, and workout on a regular basis. If you have any other questions, feel free to ask.
Carol

Remicade - will have my 19th infusion on December 27.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 12/28/2007 7:27 AM (GMT -7)   
Welcome, JJSquared. My sig pretty much says it all. I've been on Remi for almost two years with only good results. Even if it eventually stops working for me, it will have bought me a good chunk of quality life, and then I can move on to the next option. By then there may be new treatments available.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Intolerant to Asacol and rectal mesalamine preparations.
On Prednisone then Entocort 2001-2006 with only short periods off. 
Current meds are Colazal, Azathioprine and Remicade.
In remission since April, 2006. Remicade has been my wonder drug.
 

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