Share Facebook
Crohn's Disease Forum » Treatment » Remicade/Infliximab » Right, Honest answer... Whats the chances of me dying on Remicade??


 
12-24-2013, 11:22 PM   #31
Rocking on
 
Rocking on's Avatar
 
Join Date: Nov 2013
Location: Alexandria, Minnesota
Remicade made me very itchy and made my liver tests come back funky, and the doc took me off it right quick.

There isn't a single drug for Crohn's that I have tried where I didnt experience the "unlikely" side effects. For this reason I won't try humira or any other more serious drugs. This is a tough call for everyone but I have become very jaded to pharmaceuticals. Prednisone is the only drug that has really got me past the bad times. Alas, she is my demon lover.
12-29-2013, 09:24 PM   #32
308gtsi
 
308gtsi's Avatar
 
Join Date: Sep 2013
And I feel it's important to point out that forums such as these draw folks who are the sickest, who have failed multiple treatments, are newly diagnosed or are frustrated with the diagnosis process. People for whom treatment is working well generally are busy leading their lives so you won't hear from many of them. FWIW
That's a good point and it's really too bad because the people who it under control maybe know something or are doing something that has let them control the disease. But because they don't come here we will never know what those successful patients are doing. No doubt we all respond differently but there could be some great insights to be gained from talking to those who can consistently keep their Crohn's in remission.

At this point I am trying to maximize my efforts to get this under control and will leave no stone unturned. I will b trying nontraditional treatments including herbals and traditional treatments and will share what I learn if anything and I thank all of you for sharing our experiences. I learned a number of things from this forum already so thank you all.
12-29-2013, 09:38 PM   #33
sickofcrohns
Senior Member
 
sickofcrohns's Avatar
 
Join Date: Aug 2012
Location: Toronto, Canada
That's a good point and it's really too bad because the people who it under control maybe know something or are doing something that has let them control the disease. But because they don't come here we will never know what those successful patients are doing.
Keep in mind that some of those people -- if not a majority of them -- just have a milder version of the disease. I've run into some people who have mild Crohn's just in daily life. They don't see the disease as debilitating because they have it so mildly.

Luck of the draw, I guess.
12-30-2013, 03:44 PM   #34
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Remicade was a miracle drug for my son as well.
He was allergic to it and had two separate reactions ( one with IV steroids given before hand).
But he is an allergic kid in general ( he has had anaphylaxis before to other things).

Risk versus benefit should be the key thing to discuss with your doc.

my son did not see any real benefit from the other meds he had taken but had all the risk involved.
Remicade and now humira have given me my kid back.

we take risks every single day
no one bothers to put them in front of us or make us decide if the risk is worth it.

case in point

risk of death kiddo under 14 in US
from a car 1 in 250
from drowning 1 in 1000.

but I take those risks every day for my kid.

good luck.
__________________
DS - -Crohn's -Stelara
08-01-2017, 08:26 PM   #35
emilyt804
 
Join Date: Aug 2017
Location: Richmond, Virginia

My Support Groups:
My mom almost died from her first dose of Remicade (she had a same-day respiratory reaction).

She ended up in the ER for several hours.

I hear now they pump you full of IV Benadryl before starting the Remicade infusion...is this true?
08-01-2017, 09:49 PM   #36
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
They gave me Benadryl by pill but thst was several years ago but maybe things have changed since
08-01-2017, 10:12 PM   #37
Caitlyn336
 
Join Date: Jul 2017
Location: Reno, NV
They gave me Benadryl by pill but thst was several years ago but maybe things have changed since
I have been doing remicade for over a year. They give me oral benadryl and Tylonol before the infusion and let me sit with it for an hour before they start. I tried skipping it once and it was a mistake, had flu like symptoms for three days.

Last edited by Caitlyn336; 08-02-2017 at 11:11 AM.
08-02-2017, 08:23 AM   #38
sickofcrohns
Senior Member
 
sickofcrohns's Avatar
 
Join Date: Aug 2012
Location: Toronto, Canada
I have to have a high dose of steroids before every infusion. I tried Benadryl alone twice -- reactions both times. I tried a lower dose of steroids plus a lot of Benadryl -- and I had a Benadryl overdose reaction *plus* a significant allergic reaction to the Remicade. But on my regular dose of steroid pre-med I'm OK.

--> I've been on Remicade for 14 years now. I'm also someone with multiple severe allergies to other things.
Reply

Crohn's Disease Forum » Treatment » Remicade/Infliximab » Right, Honest answer... Whats the chances of me dying on Remicade??
Thread Tools


All times are GMT -5. The time now is 02:28 AM.
Copyright 2006-2017 Crohnsforum.com