Help - remicade

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vicksie
New Member


Date Joined Jun 2008
Total Posts : 15
   Posted 11/14/2008 7:30 AM (GMT -6)   
Hi folks, I don't know wether anyone can help but four mths ago i had a severe flare of uc and had to have my colon removed. Now i have been left with approx 20cm of my rectum, ths is now severley ulcerated ( i had a scope the other week ) I now feel really ill again passing blood and feeling really sick. The Dr that i have seen has recommended i start remicade and imuran. I thought when i had my colon removed that would be the end of taking all the meds, but obviousley i was wrong.
Should i go with the remicade and imuran or should i ask for somethink else as i really do not want to take these strong meds ?
Any responces would be much appreciated
xxxxxxx yeah

EddieNWIndiana
New Member


Date Joined Nov 2008
Total Posts : 1
   Posted 11/14/2008 9:01 AM (GMT -6)   
Tried remicade 3 x with no result in 2005.  After visit to mayo clinic in late 05 tried a double dose with still no result.  Male 48 years old.  Good luck.

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 11/14/2008 10:12 AM (GMT -6)   
Do you have an ostomy or j-pouch? I'm on Remicade and have had excellent results. It's been about 3 years now. Since most of us still have our colons, you might want to post this question on the ostomy section, or if you have a j-pouch, try www.jpouch.org. Hope this helps.

Carol

Remicade - will have my 25th infusion on November 26 
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 11/14/2008 9:46 PM (GMT -6)   
Sorry I can't help much, as we are going for the 3rd Remicade infusion next week. So far, so good. Not much else worked for us, and we are in the surgery avoidance mode. Make sure you are with a very good doc, from a teaching hospital, preferably. Get good advice for the pro's.
Take care
Daughter,15 diagnosed 1-08 w/ UC Learning from you all.
Asacol, Prevacid, Flagyl, Prednizone 50mg, major flare, now off!, Hosp. @ U of C, Comers, four x this yr. Low residue diet still, and still having problems.
6MP, Colazol ,horrible acne/moon for awhile- No more Pred,but 6mp isn't working. Remicade next up.
Trying probiotics, fish oil, and Mangosteen for kicks.
update:
On 2nd infusion of Remicade, and still on all of the other drugs., except Flagyl and Pred. Better, not healed.


neednewbody
Regular Member


Date Joined Sep 2008
Total Posts : 59
   Posted 11/14/2008 9:53 PM (GMT -6)   
I loved remicade. it saved my life.  After the first dose, my life changed.  After the second and third doses... I almost forgot I had any issues. 3 yrs later and now, I have developped antibodies to the drug or something and it no longer works.
but I had no side effects from it.
 
Imuran however, I hated.  It made me sooo nauseous.  I used to dry heave daily.  gingerale helped, but I stil hated it.
Liver transplant 2004 -- liver is only healthy part of me
Prograf 1mg bid for transplant
 
Remicade every 6 weeks - not working
pentasa 1500mg tid
palafer once daily
lomotil every day as needed
immodium every day as needed
 


vicksie
New Member


Date Joined Jun 2008
Total Posts : 15
   Posted 11/15/2008 2:38 AM (GMT -6)   
Thanks everyone for all your replies, spoke to my doc yesterday and he is starting me on imuran first then if that does not work i will go on to remicade.
I have currently got an ileostomy, and i think the docs were hoping to connect my ( remaining bits ) back to gether but because whats left is so severe there would be no point now.
If the drugs do not work then i will have to have surgery to remove whats left, its all fun.....
Thanx again everyone xxxxxx
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