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I would like your opinion please about getting Remicade

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Ulcerative Colitis
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Posted 12/20/2013 3:08 PM (GMT 0)
My doc had me coming in two days ago to discuss my blood work.

He said it's good. No low iron, no c protien reaction (showing no inflammation) just my LYMP was a little high, he said to be expected with UC.

He ask me, did I still want Remicade because my blood work shows I don't need it.

I'm still having some blood, NO FORMED STOOL, lots of diarreah and some urgency. My UC still limits me to my house and my anxiety about leaving the house "what -if" and a bloated belly keeps me in too. Because I know if the gas passes so does liquid or even poop. 

I said, well I think so. He said ok. Geez what would you do? I'm on 4 lialda a day, but 5asa even though once before on asacol my GI said I was in remission and no ulcers in my colon I was having accidents and mushy poop. It wasn't remission in my eyes, I just wasn't bleeding anymore.

What would you do since Remi is a tough drug on the system? It's up to me now my doc said. But three months on my colon report it was SEVERE and he said then Remicade is almost a must. Now because of my blood work being good, I have a choice. I'm so confused. Weigh in will you please? Thank you :)

Posted 12/20/2013 3:12 PM (GMT 0)
Therearemiracles, since you are "still having some blood, NO FORMED STOOL, lots of diarreah and some urgency", then yes, absolutely yes on starting remi. All of those things point to inflammation, regardless of what your bloodwork shows (and I don't beleive bloodwork is the most reliable indicator for inflammation). I bet if you had a scope then they'd see inflammation. In the end remi might give you an improved quality of life, so I'd try it and see if it does. If no improvements happen while on Remi then you can stop it cold turkey and be done with it. So it seems like a limited risk to me.

I don't know where you get "remi is harsh on the system" from, I've had no issues, no side effects at all.
Posted 12/20/2013 3:24 PM (GMT 0)
Thanks IPOOP, I tried Humira and it made me so sick and I thought it's the same drug (made up of the same stuff) I will continue, Monday at 9. They told me to take 2 tylenol (for headache) one benedryl for reaction if there is one. Do you take anything while getting your infusion?
Posted 12/20/2013 3:44 PM (GMT 0)
While it is true Humira and Remicade are both TNF-alpha blockers, they are not the same drug. The proteins in each drug were engineered differently, have different physical structure, and so your body will react differently to each. Each of these drugs has different success rates, remi has the best odds for those of us with uc (60%+ success rate for remi vs about half that for humira). I know remicade is engineered from mouse proteins, and I haven't developed whiskers, big ears, or an insatiable appetite for cheese so far lol.

I take claritin for the anti-histamine med, and tylenol before my remi infusions. Claritin is non-drowsy, unlike the benedryl you might take. Premeds are optional, not everyone takes them. They are to prevent injection site reactions and such. The worst thing that will happen if a reaction occurs, is they'll simply slow down the IV rate, give you those meds, and then ramp it up again after a while. Most importantly, bring a book, ipad or something along with you to the infusion as they are long, 2-3 hours, and boring. I hope it works as well for you as it has for me.
Posted 12/20/2013 3:50 PM (GMT 0)
Thanks :)
Posted 12/26/2013 2:30 AM (GMT 0)
Day two and no changes really :( bummer I know some people might not see improvement until second or third dose
Posted 12/26/2013 3:00 AM (GMT 0)
I hate it when doctors try telling you that you're doing better than you are. I agree with IPOOP and the others.
Posted 12/26/2013 3:42 AM (GMT 0)
Hope the remi helps. I would take it in a New York minute. Humira is losing its umph for me right now . Might have to change things up with my meds. I know what it's like not to leave the house in the morning. I never make early work appts. Never before 9 am. I cringe at the thought of a client asking for an 8 am appointment these days .
Posted 12/26/2013 4:11 AM (GMT 0)
boo, I wish you were reporting better results. It would be a nice christmas gift to see you feeling well. I would give it some time and try to think positive. I've read that Remicade if much more effective for UC but the benefit of Humira is that if it works for you, it is likely you won't build up antibodies to it. Faith's experience may be proving that theory wrong. I hope not!
Posted 12/26/2013 2:04 PM (GMT 0)
I didn't notice a huge difference until after my 3rd infusion. Patience is the key :)
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