Starting Remicade

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Redeemed
New Member


Date Joined Nov 2016
Total Posts : 8
   Posted 1/2/2018 5:44 PM (GMT -6)   
Got a call from the doctors office today to start Remicade next Monday. Been taking Uceris Foam for close to 2 weeks now, but today has been one of the worst days in years. I’ve been to the bathroom 7 or 8 Times now and that’s for the last 5 to 6 hours. I feel horrible and run down now, probably from the blood loss today. Still have questions about if the Remicade will work, and whether I still will need other medication(s) to bring down this flare. The Uceris foam doesn’t seem to be helping at all now, the first couple days were good though. UC is an unfun journey at times, but I’m holding out hope.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12125
   Posted 1/2/2018 6:32 PM (GMT -6)   
Remicade helps improve the symptoms of about 65 percent of UC patients. Pretty good odds but not a guarantee. You'll know in 6-weeks or less if it is your solution.

Often you need multiple medications simultaneously to achieve a remission.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Severe flares make the common toilet worse than any medieval torture imaginable. The rack? Bah! I survived the thousand razor blade poop for weeks!

notsosicklygirl
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Date Joined Dec 2008
Total Posts : 16069
   Posted 1/2/2018 6:42 PM (GMT -6)   
I agree with iPoop. Definitely good odds. I've seen so many people escape severe flare ups with remicade here. It can also work very quickly, which is fantastic. Keep your chin up. Uceris foam, while a great option for rectal inflammation, will not do anything for the higher areas. I am surprised you haven't moved to tablets, but if you can wait it out, and remicade gets you back to 100%, that would be great. Steroids are never fun.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

geezernow
Regular Member


Date Joined Nov 2017
Total Posts : 63
   Posted 1/2/2018 6:52 PM (GMT -6)   
Remicade has certainly worked for me...most of the time. I'm having a flare right now and pooping like a dang duck, but it's been SO much better with Remicade....over 20 years now. Good luck!

marciac12
New Member


Date Joined Dec 2016
Total Posts : 19
   Posted 1/4/2018 7:51 AM (GMT -6)   
Remicade worked for me! I was sick all spring / summer and started Remicade in July and within two weeks I was able to stop prednisone (I was already tapering), and my Dr. pulled me off Lialda after the second infusion. I was really nervous to start Remicade because of the possible side effects and I have a major fear of needles. However, I had a colonoscopy at the end of December and my Dr. said that there is absolutely no disease anywhere! I am thrilled. I feel great other than being pretty tired the day after the infusion. The only advice I can give is to drink a ton of water two days or so before your infusion and bring a little snack. I owe my remission to Remicade. Good luck! I hope it works for you like it did for me!

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12125
   Posted 1/4/2018 9:22 AM (GMT -6)   
What to expect from a first remicade infusion? They'll likely have you fillout a questionnaire form (have you had any recent infections, are you pregnant, etc.), weigh you or ask your current weight (remi is a weight-based drug), they'll give you premedications (tylenol and your choice of anti-histamines: claritin or bendryl), you'll sit or laydown, there will be a tiny prick from setting the IV, and you will wait for 2-3 hours while the medication drips and that's pretty boring (so bring an eReader, book, or other form of entertainment to keep you busy). There is is no sensation during the infusion itself. A nurse checks your vitals a few times (temperature, pulse, and blood pressure). Afterwards they remove the IV, put a bandaid on, and send you on your way. You can drive yourself home. Some report being fatigued within 24 hours of the remicade infusion, so you might want to plan some time to relax afterwards just incase you are tired afterwards.

Bring activities to keep you busy for 2-3 hours during the infusion. If you opt for benadryl then you might take a nap, it is drowsy. I prefer claritin, as it is non-drowsy. Infusion centers vary on whether or not they offer you food and drinks, mine always has. Currently I get my infusion at a hospital and they let me order and eat a meal there, and they bring drinks. Other places have bags of various snacks, and a cooler of drinks.

Overall, it is pretty easy-peasy. The nurse monitors you for signs of an infusion reaction (a headache, increased heart-rate, etc.) and should it happen (uncommon), they slow the drip rate and give you more anti-histamine/claritin/benadryl. When you take the antihistamine in advance, the odds of reactions are greatly reduced, and usually for that reason they just give those upfront before starting the meds.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Does the 5-second-rule apply to soup?

Redeemed
New Member


Date Joined Nov 2016
Total Posts : 8
   Posted 1/4/2018 11:24 AM (GMT -6)   
Thanks for all the details iPoop. Everything is a go for the first infusion on Monday, I'll let you know how it goes. Hopefully this will do the get the job done and fix me up.

Redeemed
New Member


Date Joined Nov 2016
Total Posts : 8
   Posted 1/9/2018 9:11 PM (GMT -6)   
The Remicade infusion went well and was over in 2 hours. I’ve had no reactions as of yet, and only 1 bowel movement since the infusion, so roughly 33 hours. Still had some blood but so far this has worked very well. Not much to report other then it seems to be a good fix so far. I’ll update in 2 weeks with the next infusion unless I take a turn for the worse.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12125
   Posted 1/10/2018 8:24 AM (GMT -6)   
Glad it went well! Sometimes remicade works lighting fast and people feel better in 48 hours or so, and other times it takes 3 or so weeks (as was the case for me).
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

A semi-finalist in the Olympic 15-meter bathroom-sprint.

cyn555
Regular Member


Date Joined Aug 2008
Total Posts : 306
   Posted 1/11/2018 11:51 AM (GMT -6)   
I started remicade in 2013 or 2014 and it has been great!! unfortunately remicade on it own wasn't enough so I am taking Azathioprine at the same time but no flare since then smile I sometimes even forget I have UC. I hope you will be symptom free for a very long time!!

- 31 year old female, Gatineau, Quebec

-diagnosed with UC june 2007 panacolitis

- 1 pentassa enema nightly or salofalk supp. depends how im feeling
- Remicade - started april 2013
- Azathioprine (alternating between 25 mg and 50 mg)
- Allopurinol (50 mg)
- in remission since jan 2014
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