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Starting Remicade Tomorrow -- Thoughts & Opinions!

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Ulcerative Colitis
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Posted 9/25/2016 9:55 PM (GMT 0)
Hi guys. I'm in the worst flare yet and I'm not responding to Uceris or prednisone. I landed myself in the ER yesterday because of the insufferable pain & blood loss. I got 120mg of IV steroids and they still didn't help as much as I would've liked them to.

Anyways, I'm starting Remicade tomorrow. I'm really, really nervous because I've heard such mixed things about it. What are your experiences with Remicade? Does the risk (cancer, infections, etc.) truly outweigh the benefit?

Super scared to be putting such a harsh drug in my body at age 21. I'm really ready to get better though.

Thank you!

ALSO -- Is it okay to be on an antibiotic when starting Remicade? I'm on Flagysl for 9 more days.

21 years old - Female - San Francisco Bay Area
Currently: 40mg prednisone, VSL #3, SCD diet variation, Flagysl (to prevent return of c diff)

Post Edited (disneygirl12) : 9/25/2016 7:53:23 PM (GMT-6)

Posted 9/25/2016 11:34 PM (GMT 0)
I'm 16 and got infliximab at 15 when I was hospitalized. I didn't expect the drug to work as fast as it did(only 3-4 days), it got me out of the flare I was in and I was feeling much better.

I have the infliximab infusions every 8 weeks now and I do have some side effects, mainly a slight(or worse) headache for about 24 hrs, feeling tired and some joint pain.

However, in between infusions I do have a flare up of UC symptoms as the infliximab wears off near to the 6-7 week mark. I may also be building up some antibodies as it's not as effective and doesn't last as long controlling my symptoms as it used to.

I haven't had an allergic reaction(yet, touch wood) and I'm having my next infusion on Tuesday.

Overall I think it's good if you have severe UC or crohn's and maybe as a last resort if other medications haven't worked as this is a heavy drug.

Hope it goes well for you.

Ziggs
Posted 9/25/2016 11:51 PM (GMT 0)
Remicade is the only medication to put my uc symptoms in remission. I had a 2.5 year remission thanks to it, but am now in a minor flare. I have not had any side effects, so yes the risks far outweigh the benefits. Prior to remicade I had been steroid-dependent at 20 mgs, flaring for 8 months, having multiple accidents a month despite the most careful precautions.
Posted 9/26/2016 12:42 AM (GMT 0)

iPoop said...
I have not had any side effects, so yes the risks far outweigh the benefits. Prior to remicade I had been steroid-dependent at 20 mgs, flaring for 8 months, having multiple accidents a month despite the most careful precautions.

You meant to say that the benefits outweigh the risks, correct?
Posted 9/26/2016 1:50 AM (GMT 0)
I had rapid and excellent response. The only side effect I had was a bad headache during the loading dose phase. Good luck!
Posted 9/26/2016 10:45 AM (GMT 0)

Richard in NY said...

iPoop said...
I have not had any side effects, so yes the risks far outweigh the benefits. Prior to remicade I had been steroid-dependent at 20 mgs, flaring for 8 months, having multiple accidents a month despite the most careful precautions.

You meant to say that the benefits outweigh the risks, correct?

oops, yes!
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