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Crohn's Disease Forum » Treatment » Remicade/Infliximab » What to expect from Remicade


01-14-2016, 10:55 AM   #1
cdnrose
 
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What to expect from Remicade

I've had 3 infusions and go for my 4th the beginning of February but I have my first follow up appointment with my GI today.

I know he is going to ask me how the treatment is working but I don't really know. I'm not sure what the expected results were supposed to be. I don't feel I have the disease as bad as some others, I don't have diarrhea every day or bleeding or the stomach pains all the time. I get occasional stomach cramps, a fair bit of gas and bloating, a lot of tummy gurgles and rumbles and I bounce between constipation and diarrhea...I don't know what "normal" is like anymore, if I ever did.

What should I be looking for in the terms of how effective the treatment is? I've altered my diet since starting treatment so how do I know if it's the diet or if it's the meds? I certainly have worse days than others where all food just doesn't sit right but I'm not always running to the bathroom, I might go once or twice and then things settle down to a medium discomfort level.
01-14-2016, 11:33 AM   #2
Bunty
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I've had three infusions too, my fourth is due on 12th Feb, and I've wondered the same thing but for a different reason.
I was still tapering steroids down for the first two infusions, and they'd worked wonders in terms of getting the symptoms sorted. Touch wood I'm feeling as good as I've felt in a long time right now with no active symptoms at all...but I don't know if this is due to the steroids or the infliximab. To be honest I'm not questioning it, just glad something is/has worked!
I guess the only thing you can do when you see the GI is tell it like it is, just as you have here, the only thing he has to go on is what you tell him.
Time alone will determine whether or not the infusions are working.
I wish you the very best of luck
Bunty x
01-14-2016, 11:42 AM   #3
Madhu
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Well, until my husband started Remicade he was flaring horribly. So he was pretty much sleeping all the time/crying out in abdomen pain/running to bathroom. After his 1st Remicade infusion, he slept for 3 days straight. Said he felt so exhausted. On 4th day he suddenly had a bout of energy and started feeling better. No pain, bathroom trips reduced and he was awake. After that until now, life has been improving gradually, knock on wood. This is how we felt the Remicade effects. I hope it helps
__________________
Hubby dx with Crohn's in Feb 2015, in remission from Feb 2016 to Feb 2017.
2 anal fistulas (setons placed in June 2015 and removed in Feb 2016)

Mild flare in Mar 2017. Remicade schedule adjusted

Current Meds - Remicade 10mg/kg
01-14-2016, 01:21 PM   #4
cdnrose
 
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Location: Ontario

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He started out the appointment by saying he knew it would be difficult to really know if the Remicade is working or not because my symptoms are pretty mild. We went through everything and it seems there has been a improvement, blood work is good and he declared me in remission.

He said the remicade seems to be working so we will continue with it for as long as it continues to do so or until it causes my rheumatoid arthritis to flare worse (hopefully that won't happen). So very good news, I don't see him for 6 months and no colonoscopy scheduled for 10 years!
01-14-2016, 01:45 PM   #5
Madhu
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That's amazing news. Happy for you! I hope you continue to stay in remission Now, get off the forum and live your life
01-22-2016, 11:42 AM   #6
Bufford
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I had my third infusion 4 days ago and noticed less blood coming from my rectum. The side effects are another thing and maybe become the make or break for this treatment. For three days I feel lousy after the infusions, symptoms include fatigue, no appetite, pounding heart beat, slightly elevated blood pressure, some rectal pain. But upon third infusion I am getting these little red dots on my belly that are itchy and burny. GP said to monitor them but these are common side effects.
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