Remicade - What made you start taking it?

I was in remission for a short while (6 months maybe?) then I got thrown into a flare last October due to a surgery I had.  So then I had to start back on Colocort.  I did fine for about a month or two then I started seeing blood again.  Now I'm flaring again, major bleeding this time - could've been due to me catching this virus thing.  But I'm beginning to see a pattern here.  It seems that when I start a new medication, it works wonderful for anywhere to 6 months to a few years and then it seems to stop working.  My 6mp has already been increased twice because according to the Prometheus test, I was at the low end of the sublevel (I wish I knew what that meant).  I vary between 50 mgs and 100mgs.  At what point do you decide to start Remicade? What prompted you? What were your symptoms?  Did you bring it up to your GI or did they?  I'm tired of seeing blood in the toilet which is my main symptom at the moment (sometimes D but not often).  In this latest flare, I was sort of disappointed to see all that blood again - and it wasn't light red, but dark so I'm assuming that the inflammation has spread higher into my colon again.

well for me, I had been flaring for about a year & a half, & had done a couple courses of pred during that time- the first course worked ok, tapered down, started becoming symptomatic again. 2nd course did absolutely nothing... I was very ill, lots of blood, lots of D, losing lots of weight. My GI did a sigmoidoscpy to check out how things looked, just prior to beginng Remicade. We both brought it up, really- it was basically the last option, as I had been on Asacol, Rowasa enemas, steroid enemas, Imuran, & pred at one time or another. The first infusion was like am iracle, the 2nd one put me in the hospital with strep pneumonia, drug induced hepatitis, heart murmurs. BAD news. But I did go back on it- after careful consideration/discussion with my GI, we gave it another try. The 3rd infusion worked ok, nothing great- I became symptomatic within 3 weeks. Then the surgery talks started- went thru all of the pre-ops, had appt. for surgery scheduled in November '07. As a last ditch effort, my GI & I upped the remicade dose- again, worked wonders the first time, & has been slowly working less & less since then. I've had 2 infusions every 7 weeks at the higher dose so far- am flaring now, mildly, mostly bleeding in the AM's, then am "ok" the rest of the day, up a couple times during the night most nights.  My next infusion is in 11 days- am hoping this will kick me back into "remission", & then schedule the infusions every 6 weeks. I gotta admit I'm discouraged- have been thinking lately "Gee, maybe I should have gone thru with the surgery.... I'd be fine by now....". BUT- saying all that, Remicade has given me the most symptom free times in my life since I was diagnosed- I say go for it! Yeah, the side effects are scary, but..... we're living now, you know? The possible complications from secondary infections are what freak me out the most- considering the fact that we're immune suppressed as it is, Remicade increases your chances of getting a nasty infection.. I still worry every infusion I'm going to wind up back in the hospital!

hey pessimist- why exactly are you anti-Remicade? Is it not helping you? And have you tried the immune suppressants, Imuran/6MP, etc? I'm not anti-Remicade, but I don't think it's the wonder drug science thought it would be. If it doesn't help, surgery is really the only other option, in terms of a "cure".

Thanks for the insights. Actually I'm not afraid to start Remicade if I have to. I think I got over that kind of fear when I started 6mp. I'm just so tired of these symptoms and not being able to control it properly even though I'm doing everything I'm supposed to be doing. I go see my GI in 3 months so if I'm still flaring by then, I might bring it up to him and see what he says.

Pessimist, a Prometheus test is a blood test they send to a lab in California that tells you different things. It depends on what they are testing for. But it's basically to check to see if you are a candidate for immune suppressors such as Imuran or 6mp. Then they have the metabolites test to see if you are metabolizing the drug properly. As far as I know, they only use this test for Imuran or 6mp - not sure if they use it for other types of immune suppressors.

I dislike Remicade for several reasons.  In general, I think it is poison.  I think it is very unsafe for short term and long term health.  I think that it produces many side effects that the doctors and the manufacturer deny.  In my case, the 6 week headache was particularly unpleasant.  I am also very frustrated with being terrified of a 3 year old with sniffles.  I can no longer interact with my family and friends effectively because I am so scared of catching any sickness they might have.  In addition, as I’ve said in other threads, I do not know if it is even helping me.  My symptoms have not changed at all after 3 infusions.  I’m fortunate enough to have very mild symptoms right now, so taking such a serious med seems like overkill in my situation. 

 

My doctor said that I cannot take the 6MP drugs because they can also cause pancreatitis. 

 

Thanks for the info on Prometheus. 

I had been in flare for 5 years, ever since my diagnosis. A combination of Colazal, Imuran and Entocort had cut my bathroom trips from 25-30 a day to 12-15. I was still bleeding a lot, having pain, and so exhausted all the time I was on the point of having to quit working and go on disability. I also was getting some very nasty side effects from steroids which made me desparate to get off them before they killed me. My choice was Remicade or surgery. I chose Remi because I prefer to try all of the medical solutions before I consider surgical solutions to my health problems.

Now I go 2-4 times a day (usually 2 recently), have no bleeding, no pain, no exhaustion. I have had one cold in the past two years and no other infections. My husband has had several colds and I never caught them. I work with preschool age children. I think my darn immune system is invincible, nothing suppresses it very much!

The craziest thing is that I never gave it much thought; and Remi hadn't even been approved for UC -- only for Crohns and RA so there wasn't much info on it about UC. I think I was so sick at the time and no other meds were working I just figured what the heck. At my age everyone is on something or has some sort of issue, but it was rough because I had never taken anything more than aspirin before I was dx'd with UC. I was always considered the healthy one! So at 46 I get UC -- go figure. At this point, I'm thankful that UC is all I really have; the rest of me is in check....well, for now!

Hmm It seems we have mixed reviews on this. But many of you already answered my questions as to why you started it in the first place. If it comes to where I have to be on Remi and if that fails me too - then at least I can say I've tried everything. Because even though I would like to have surgery and be done with this whole Uc thing, part of me always wants to know that I've fought as hard as I could and tried everything there was to try before throwing in the towel.