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Starting Remicade to fast?

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Posted 4/3/2009 10:18 PM (GMT 0)
I was diagnosed with pancolits back in Nov'08.  The symptoms havent gone away since I was diagnosed and even before when I first started noticing them back in August of '08.  My GI, I think is pretty good and has done a lot for me since I first started seeing him a few months back.  Nothing has really worked for me, Asacol is worthless, fibre supplement does nothing, sunflower seed and spinach diet is over rated, etc...

So my GI requested that I start on Remicade.  Is this to soon? Everyone that I see who is on Remicade started like 2-4 years in to their diagnosis. 

Posted 4/3/2009 10:32 PM (GMT 0)
No. Go for it. Why wait to see how much more you will suffer? Believe me!
Posted 4/3/2009 11:04 PM (GMT 0)
Nope, I don't think so. My doc said that if it turns out the course of pred doesn't work for me (it's my first flare) and I can't get off of it, he'd recommend I go straight to Remicade, too. He said that new research suggests it's better to do that than to try immune suppressants such as 6MP.
Posted 4/3/2009 11:20 PM (GMT 0)

Nope, not too soon at all- Remicade is now being used as a front-line drug for refractive cases. The reason you see most of us starting 2-4 years into flares is because Remicade hasn't been widely used 'til recently. Most GI's didn't have a lot of experience with it, & the commonly held belief was that it was a last-resort drug. Now, it's believed that you're better off going right to a biologic. Makes sense to me- there's a good chance you'll wind up on it anyway, so why let the damage worsen?

Posted 4/4/2009 12:00 AM (GMT 0)
I'll go the other way and say way too soon. No idea if you have done the rectal (hydrocortisone enemas) meds first, but I would do that before remicade. Longer you wait to need to be on a biological med the better imo. If I had got stuck on remicade back in 97 when I was diagnosed, by now my body may have already built up antibodies and rendered it useless. Where would that leave me? The way it stands I still have that option and will use it last resort. When I do move to remicade I hope it lasts long enough till something better comes out.

Asacol was pretty useless for me too. I would drop it and move to colazal and give it a try too. It helped me for a while, but eventually stopped too. Seems you have only done a 30mg max dose of pred and asacol. Just too many other options left.
Posted 4/4/2009 12:36 AM (GMT 0)
It depends on the person. I started Remicade less than a year after diagnosis.
Posted 4/4/2009 6:17 PM (GMT 0)
Thanks for all of your responses...I guess my only concern is that if I start Remicade and it doesnt work, the next treatment (or lack there of) is surgery and I im NOT ready for that.

Posted 4/4/2009 11:25 PM (GMT 0)
     I'm with the Doc on this one.  Why doesn't he try the 6MP?  My GI suggested Remicade more than once for me but his associate, who treated me while I was hospitalized, said I most definitely was NOT a candidate for Remicade as I was exposed to the TB virus back in the 60's.
Posted 4/4/2009 11:52 PM (GMT 0)
My guess is that the GI is suggesting Remicade first since it can start working faster, whereas 6MP takes a few months. Another thing I've heard of doctors doing is starting Remicade and 6MP at the same time, and then weaning off Remicade to see if 6MP will maintain remission.

(For what it's worth, I tried 6MP first but it's side effects landed me in the hospital just after 3 doses, and I immediately started Remicade)
Posted 4/6/2009 2:48 AM (GMT 0)
We were on the fast route to Remicade. Did all the known drugs, from low to high doses in under 10 months. Wish it weren't so, but it was the way it worked(or didn't work). I wouldn't rush there if other options are still untried, because once you build up antibodies to this drug, you are almost out of tricks. Only Humeria left. Get the 6mp working, ramp up the rectals, try the Colazal, and then.....the Remicade. For us, it was the only relief my daughter ever had since the first days.
Posted 4/6/2009 7:08 AM (GMT 0)
Since my diagnosis in Oct 08 I have tried all the different drugs with little or no effect. I've been on Prednisone since December 08 and I'm desperate to get off it. I practically had to beg my GI doc to let me try Remicade since my quality of life has gone into the toilet (literally). She said she wanted to wait until we were at "last resort" time, and I had to ask her: I'm not working, I'm a single parent, I'm barely functioning, I'm a slave to my diet and my toilet... how much worse does it have to get??

I'm having my first infusion tomorrow and I'm a bit nervous about it, mostly because a) I'm really not fond of needles so a prolonged IV infusion makes my brain itch, and b) my string of failures when it comes to medical interventions really has not given me much cause for optimism. But, from what I've read here and other places, it seems like it has a good chance of helping. So, here goes nothing. No time like the present, I say.
Posted 4/6/2009 1:15 PM (GMT 0)
My dr didn't waste any time. After trying Canasa, Asocol, Pentasa, Lialda, Prednisone - nothing was working fast enough (or at all). I was deteriorating fast, so because of that, I think he thought I didn't have the few months to wait on more drugs. He got me started with Remicade within 2 months of the flare starting up, and within 24 hours I was showing major signs of improvement. I'm glad I listened to him and didn't wait. It's an idividual decision though. Good luck!
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