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Remicade users, how are you doing?

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Ulcerative Colitis
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Posted 2/12/2014 2:35 PM (GMT -5)
Posted this by accident on the Crohn 's forum. It belongs here.

Hello, I haven't seen many posts on remicade lately, so I just thought I would check to see how everyone who is on it is doing. I have had my fourth infusion so far. This would have been my first eight week maintenance dose , but I had it moved up a little early because I noticed some increased urgency and a little blood. Hopefully I just needed that extra kick to get things back in control. The urgency I have had is much better on the remicade, but no where near gone. Hopefully this one does the trick and gives me the ability to go out more without worrying. I guess I'm looking for some reassurance and some remicade stories to see how everyone else is doing on it. Looking forward to hearing them. Thanks.
Posted 2/12/2014 3:33 PM (GMT -5)
I started remicade in sept 2013 and as of this week I'm finally off of prednisone. I was on the crazy pred train for 13 months straight. Now, no urgency, 1-2 bms a day, all well formed with no blood no mucous. This is the best I've felt since before acquiring uc, over 2 years ago.
Posted 2/12/2014 4:55 PM (GMT -5)
I was on Remicade and it was amazing. For me it started working after about 2 months, and I didn't need steroids. I never had any problems with it while I was on, besides having the worst veins known to man. I did have 2 different reactions, about a year apart, but they weren't serious. Couple hours in the er and some fluids and Benadryl later I was fine. Hope it works out for you!
Posted 2/12/2014 5:27 PM (GMT -5)
Hello
I have not posted for 5years since i been on Remicade ,that is how long i have been without a Flare or any problems ,had my gallbladder out October and now i having a Flare this week i dont no if has anything to do with it, Remicade Friday ,GI Saturday ,i was told by the Surgeon i had Diverticulitis ???
Remicade gave me my life back. cool




Ulcerrated Colitis
Gerd
Diabetic
Mercaptopurine 50mg 1xday
Balsalazide Disodium 75mg 3x3 aday
Omeprazole 500mg 1x aday
Metformin 500mg 1x 1aday

Post Edited (RMA) : 2/12/2014 3:37:22 PM (GMT-7)

Posted 2/12/2014 5:36 PM (GMT -5)
99% of my large intestine is doing awesome! December biopsies show quiescent colitis all over the place. I have very few to no colitis symptoms.

Unfortunately, the 1% that is not doing well are two large bowel strictures that Remicade will not cure. I do have symptoms from the strictures, so I don't really get to enjoy my 'remission'.
Posted 2/12/2014 7:34 PM (GMT -5)
Just had my 48th infusion this morning, and doing great.
Posted 2/12/2014 8:58 PM (GMT -5)
Been on Remicade for over 5.5 years (somewhere around 38 infusions) and in remission for 5 years.
Posted 2/12/2014 9:20 PM (GMT -5)
I've been on it for almost 2 1/2 years and in remission for 2 years. This is the ONLY thing that has gotten me in remission after 22 years of flaring (sometimes mild and sometimes severe).
Posted 2/13/2014 12:09 AM (GMT -5)
I have been getting Remicade infusions since July 2013. I am now getting a double dose every 6 weeks, instead of 8 because I was still having symptoms. Though I am definitely not in remission, Remicade has been the most helpful med I have been on since being diagnosed. I am hopeful that the longer I'm on it the better I get.
(I am also on 6mp so maybe the combo is helping too.)
Posted 2/13/2014 12:13 AM (GMT -5)
Love it. 2nd year and have been in remission the whole times. no more 12 pills a day just a infusion every 8 weeks.
Posted 2/13/2014 12:59 AM (GMT -5)
Been on Remicade just over two years so far. I was determined to be in remission via scope after a couple months, but only really felt like I was doing well about 8-10 months later.

I developed severe pains six months after starting the drug. I have done extensive testing and not found anything wrong, so I stay on the drug even though I assume it to be the issue. I take tramadol and tylenol every day and seem to do okay then!

Having a healthy colon is a great thing. My GI doctor is very good and he believes Remicade is the way to go... so I bet you do well. :)
Posted 2/13/2014 1:46 PM (GMT -5)
Been on Remicade since Sept 2013, still doing 10mg/kg at 4 week intervals while trying to taper pred. I believe we will do 1 more 4 week interval and then go to 6 weeks and see how things go from there. Still improving everyday...just very slowly. I'd say I'm between 85-90% healed right now.
Posted 2/14/2014 2:34 PM (GMT -5)
I had two rounds and my colon was worse and went into hospital last week for a few days. Now I'm on antianexity meds and I'm feeling great!
Posted 2/15/2014 5:02 PM (GMT -5)
Doing great!
Posted 2/16/2014 5:54 PM (GMT -5)
Also doing great. Except I have low iron and hair loss and I'm not sure if remicade or low iron is to blame for the hair loss. Hope it's the iron. Really upsetting.
Posted 2/19/2014 2:41 PM (GMT -5)
Thanks to everyone who wrote all of the encouraging posts about their experiences on remicade. It is really helpful to see how others are doing in their treatment in comparison to mine. Is does seem like the urgency I am experiencing will go away with a few more treatments. It's already much better after my last one. It could be anxiety that is still there from before the remicade. I do notice that I worry way to much about the restroom when I'm out. Funny thing is, when I get home the urge usually passes. Anyone who hasn't posted about their experiences on remicade; I would love to hear how you are doing.
Posted 2/20/2014 9:46 AM (GMT -5)
All good with Remicade - just avoid stress where humanly possible, because that is a main instigator of UC in my view.
Posted 5/18/2014 2:05 AM (GMT -5)
Remicade cured my worst flare ever, after 10 yrs of UC. It lasted 9 months. I see now it was unnecessary suffering. I was too scared of remicade so first tried mesalamine & 6mp, but needed prednisone to recover from allergic reactions to both drugs. Thanks to postings here I became courageous enough to try remicade. I was 100% better within 2 weeks. Have been on it 5 months & feel great! Wish I had taken the leap sooner. I take 4 premeds before each infusion - Tylenol, Benadryl, as well as Zofran & phenergan because I had nausea during infusion. They work perfectly.
Posted 5/18/2014 4:40 AM (GMT -5)
Thanks Contentprof, I'm glad you are doing well on remicade. I'm on my 6th infusion but progressing at a slower pace. By the way, I see this is your first post; Welcome!
Posted 5/18/2014 7:52 PM (GMT -5)
Darn, I just started and hadn't realized this might be long term.

Was hoping to do it for maybe a year, have a scope, and if I'm fairly clear to go off it and just go back on Lialda.

Not sure if I can handle this expense, and have no idea how to ask a new employer for a 1/2 day off every 8 wks.

Ayiyiyi...
Posted 5/21/2014 4:33 PM (GMT -5)
I have my third infusion tomorrow....feeling slightly better but not even close to 100 percent. I want this to work more than anything!! I might not sleep tonight.
Posted 5/21/2014 5:11 PM (GMT -5)
13 months after very scary flare that ended with a 3 week hospital stay, 6 GI telling me to consider surgery and a special approval to get both a rescue dose (closer loading doses) and ongoing double dosage for Remi - today I got a clean bill of health where my colon is concerned!

I did have a minor hickup for 7-8 weeks this winter with a bit of blood/mucous on stool but otherwise Remicade has been great for me!
Posted 5/21/2014 8:54 PM (GMT -5)
Canadagirl, how many infusions did it take for you to feel better? I mean really know that it was helping. I am much better at my 6 infusion, but still have the urgency. I have been using cortifoam lately and that seems to be helping.
Posted 5/24/2014 1:21 AM (GMT -5)
Thanks for the welcome Lr21. I am so greatly to all of you. I read entries on this site for over a year before I posted. I really suffered for way too long, & it was such a comfort to hear your experiences which led me to my success on remicade after too many false starts (asacol, 6mp, prednisone). In my post above I also forgot to mention that I used cortenemas for over six months which did help reduce urgency a bit but nothing made the bleeding stop until remicade. I hope it helps others. I got my life back!
Posted 5/24/2014 5:58 AM (GMT -5)
Lr21, I know from this site everyone responds differently for Remi. For myself I had the 3 loading doses closer together than the standard protocol and except for the first dose i've always had twice the amount of drug (insurance company just loves that! lol) but it worked relatively quickly. things turned around after dose 2 and really improved a few weeks after dose 3. 2 months after first starting Remi - I was symptom free. No more urgency, frequency, pain, blood, mucous. By the 4th infusion I was off all other meds and feeling really great!

Hope yours kicks in full force soon, perhaps discuss with your GI to see if double dose is an option? I know my GI says studies have proved up to 4xdosing is safe so I'm not too concerned at double (not that they use that but it is considered safe!) and I know he is hoping that I can go down to single dose at some point but since I had some blood/mucous this winter he wants to wait longer before reducing anything.
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