Hit a brick wall with meds...Remicade?

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mh53mike
Regular Member


Date Joined Aug 2008
Total Posts : 149
   Posted 9/3/2008 8:07 PM (GMT -6)   
Hi all,
 
I have had UC for 3 years now and cant really say its ever been properly managed.  I would get a flare and have to start a prednisone tapper usually starting at 60mg. The flare would be done by the time i got to 40mg...prednisone has carried me through my flares. I average about 2-3 months between flares or when the predisone tapper stopped before another flare would start. But recently i start a flar back in late march and and got on my tapper starting at 60mg...i had different results and even slowed the tapper down but the blood and mucus and bowel movents never returned to normal.  Thus the flare did a 180 back up the severity scale...back on prednisone...60mg for two weeks, with no help. GI said it was to much and lowered it to 40mg..been on that dose for 3 weeks now. Still blood and mucus, this has been going on for nearly 7 months which worse than i ever had.  I am afraid i have build a tolerance for prednisone..anyone else expierence this? I am also curious about REMICADE and asked my GI about it and he doesnt want to put me on it yet. But how long can someone bleed and deal with this??? I really dont see many options. I really want ot get of these steriods!  
26y old male med disharge veteran
 
Diagnosed with UC (lower proctitis) in 2004
Current daily treatment:
1000mg sup asacol
2400mg oral asacol
40mg prednisone
75mg azathioprine
20mg Nexum
 
Still 4-5 bloody, mucus bowel movents a day! Blah...


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/3/2008 8:32 PM (GMT -6)   

yes, prednisone can lose it's effectiveness.  In fact meds fail about 20% of UC patients, I was in that 20%.  Life is much better for me post colon.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


creamofrice
Regular Member


Date Joined Jun 2008
Total Posts : 32
   Posted 9/3/2008 8:56 PM (GMT -6)   
Remicade is last option. It's the step before they take your colon if nothing else works. and one can become immune to it eventually. they didn't put me on remicaide until after i was in the hospital for 8 weeks straight and had, had 5 blood transfusions. i think you basically need to be on your death bed before doctors will prescribe a medicine that cost 10,000 per infusion.
Female-22
Diagnosed with Severe Ulcerative Colitis in Dec 2005 at age 19
2nd flare up-Hospitalized for 41 days (april-may 2008)
prednisone 25mg (tapering)-taking sicne 2005 :(
asacol 400mg-9 pills a day
remicade (just started)
iron, calcium, vitamin c
Attempting Diet-Eat right for your blood type (Type O)


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/3/2008 10:17 PM (GMT -6)   
Actually, that isn't the case. You just have to not have adequate improvement from the "lesser" drugs. I went through all the 5-ASA's, immunosuppressants and steroids, then had to wait about a year for Remicaid to be FDA approved for UC. In short, I was in a very severe flare for nearly five years.

Prednisone tends to be less effective over time; there's also the issue some of us have that we can't taper off steroids without going into a massive flare.

Some people (depending on insurance coverage) have the additional option of Humira if Remicade doesn't work. Hopefull it will be approved soon and therefore more available to us.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

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