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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Starting Remicade. Any tips?


08-16-2012, 01:00 PM   #1
shmo
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Join Date: Jun 2012
Location: British Columbia
Starting Remicade. Any tips?

Hello,

Looks like I'll be starting Remicade shortly. Any tips from users that maybe the doctors don't always cover? I understand it will lower my immune system, so try to avoid the sickos. Anything else?

Oh, also how long do the infusions usually take? Would I be able to return to work right after it's done? (barring any bad reaction to it of course)

Thank you very much for all your help!!
08-17-2012, 12:24 AM   #2
tots
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I didnt have a bad reaction- but, I did let my anxiety get away from! I felt everyside affects - thats before they even had me hooked up!!

It takes about three hours start to finish- I am tired after and need a nap but, Benedryl and Zyrtec both knock me out- thats what makes you sleepy!!

Lauren
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Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


:


Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
08-17-2012, 12:42 AM   #3
kllyeve
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Location: Edmonton, Alberta

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Drink some extra water the morning of so that you have great veins when you get there. Makes getting the IV started easier.

Bring a blanket. I get cold from the infusion as it is room temp saline and then cold Remicade is added.

It takes 4 hours the first time as you must stay an hour after the infusion in case of a reaction. Some places allow you to sign a waiver after the loading doses so that you don't have to do this.

I can't do anything afterwards as the IV Benedryl I get makes me very sleepy. I no longer bring anything to do during my infusion as I fall alseep about 20 min after the Benedryl.

Arrange for a ride home, especially if you get really sleepy from medications, I am not allowed to drive afterwards.

Hand sanitizer is my new best friend, I take it everywhere. Just keeping your hands clean will help avoid alot of the gems out there. I also no longer touch handrails, knobs or doors if I can possibly help it. The only places I truly avoid are hospital rooms with MRSA or VPE (antibiotic resistant superbugs) or really contaigous things like Clostidium Difficile( bug that causes bad intestinal infection- its treatable, but not fun to have)

It is scary to take, but hopefully it will work for you. It may take one to 4 doses for you to see any improvements because as you know all Crohnnies are somewhat unique specimens. Good Luck.
08-17-2012, 01:30 AM   #4
PattyLynn
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Join Date: Jul 2012
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I don't get Benedryl with my infusions. I always bring my laptop and a book to help pass the time. The first three infusions take the longest - mine were three hours, but they get quicker each time. I just had an infusion this morning (my first at double the dose!) and I was out of the clinic in 2 hours and 15 minutes! And I felt great.

I started my infusions in November 2011 - the worst time of the year for colds and other germies - and I work with children so even though I was SO careful I ended up with laryngitis twice last winter. Remicade really suppresses the immune system so just be extra cautious.

The advice from kllyeve is fantastic - drink lots of water and take a blanket!!

Good luck, I am sure it will go well!
__________________
DX - Crohn's Disease 1991
Current meds: Azathioprine, Remicade, Pariet, Percocet, Effexor
Past meds: too many to remember! But a super long stint on Prednisone that made me gain 40lbs - I'll never do that again!
Surgeries: Resection 1992; Ileostomy in 2000; Proctectomy 2004; 11 surgeries from 2000-2007 for various problems associated with Crohn's (resections, prolapses, hernias; twisting of the intestine, etc.); Surgery #13 is imminent to repair a fistula and possibly do another resection
08-17-2012, 12:32 PM   #5
shmo
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Join Date: Jun 2012
Location: British Columbia
Thank you all for your help!!

Is it a choice whether you get Benedryl with your remicade?
08-18-2012, 01:18 AM   #6
PattyLynn
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I was told that if I had a reaction - which I understand happens quite quickly - then they will give you a dose of Benedryl and then every subsequent infusion would also include Benedryl. At the clinic I go to, there was a guy there yesterday who gets Benedryl but they just gave it to him orally. I've never had a reaction so I've never needed it. I am not sure if other clinics automatically give Benedryl as a preventative but I am glad mine doesn't. Oh, I just noticed you are from BC. You don't have to tell me where exactly but if we are from the same area, you will probably go to one of the clinics run by BioClin, which is where I go. If so, then they probably won't give Benedryl automatically.
08-18-2012, 04:47 AM   #7
ThanksP
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I am given Benadryl in my IV first. I didn't need it for the first 5 or 6 infusions but after I got ONE little ol', itchy hive, my doc decided I needed it. It just makes me a little sleepy for a half hour or so and then I'm good to go. I guess how the Benadryl effects you depends on the person.
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08-18-2012, 01:09 PM   #8
kllyeve
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My Gi prescribes oral Tylenol one half hour before infusion, then IV hydrocortisone, and IV benedryl to be given 15 minutes before the clinic starts the actual Remicade. The 2 premeds are supposedly to help prevent allergic reactions and antibody formation.
08-18-2012, 01:43 PM   #9
SarahAnne
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I think the administration of the benadryl, anti-histamines, tylenol, etc. is up to your individual doctor. It seems that most people take the pre-meds if they have had a reaction previously, but some docs will order them regardless just because of the chance of a reaction.

kllyeve is precisely right, HYDRATE the night before!! My veins are terrible and I have "sticky" blood, if I don't drink enough water the night before getting the IV in is a pain. Actually, that is the worst part of the whole process for me.

I was concerned about getting sick as well, I have two children in elementary school and I was sure I was going to catch everything that went around. Interestingly enough, I didn't get sick over the school year, but caught a stomach virus at a water park last month. Go figure.
__________________
Dx'd Crohn's April 1996
Bowel Resection w/appendectomy Oct 1996
Gallbladder removed Nov 2005
4 procedures in March/April 2010 to remove a kidney stone
Dx'd Dyshidrotic Eczema April 2011
Dx'd Pancreatitis July 2011
2nd bowel resection 10/12/11 - I have 130cm of small intestines left!
Dx'd Chronic gastritis April 2012

Currently taking:
Cholestyramine powder 1-2x daily
Remicade 5mg/kg every 8 wks
Vitamin D3, B12
08-18-2012, 01:46 PM   #10
shmo
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Join Date: Jun 2012
Location: British Columbia
Hmm, interesting. I had no idea. Thank you!

Also Patty, I think my GI said that I'd be going to a clinic across the street from Richmond Hospital for it.

Unfortunately for timing I'm starting a new job next week and I'll have to inform them of all this. It's a job where the less time I have to take off, the better, so just wondering whether I can go back to work after an infusion, or if I should try and book them for the end of the day so I can at least work in the morning/early afternoon (assuming I have a choice/say in the matter)
08-18-2012, 01:48 PM   #11
shmo
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Join Date: Jun 2012
Location: British Columbia
Hah...I just realized my wife is an elementary school teacher. Didn't even think about her coming home with germs. Uh-oh. Maybe I'll set up a shower of sanitizer at our front door :P

....sigh...
08-18-2012, 07:04 PM   #12
kllyeve
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I start back to work in a couple of weeks and I am not looking forward to dealing with the hassles over the infusion appointments. I have no real say in when they happen - they are due during a certain week and I am supposed to get the infusion within 3 days of the 8 week due date. But I don't have a lot of say when the appointment is as it depends on the nurses schedule which doesn't seem to be consistent at this point. Availability it a problem as well as there are only 6 chairs at the clinic. I'd love to schedule mine on a Thurs as I find by the second night I can be really tired, but they've been all over the place.
08-19-2012, 01:17 AM   #13
PattyLynn
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Location: Vancouver, British Columbia
Hey Shmo,
My work day is 8:00 am - 4:00 pm. I usually schedule my infusions for 1:00 pm. That way I work from 8-12:30 and then head to the clinic. I don't return afterwards because I usually don't finish the infusion until 3:30 so it would be pointless to go back to work. That being said, if I ever had to have a morning appt I would most certainly go to work once the infusion is done. I have always felt fine afterwards but wait and see how it goes for you.

Sounds like you will be going to the clinic on Gilbert Road - they may offer evening and/or Saturday appointments which may work better with your schedule. Here is the link to the BioClin website so you can check it out in advance http://www.bioclin.ca/
08-19-2012, 07:57 PM   #14
shmo
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Join Date: Jun 2012
Location: British Columbia
Thanks Patty! That's the one. Thanks for the website link!
11-29-2014, 05:38 PM   #15
jonique
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Hey Shmo,
My work day is 8:00 am - 4:00 pm. I usually schedule my infusions for 1:00 pm. That way I work from 8-12:30 and then head to the clinic. I don't return afterwards because I usually don't finish the infusion until 3:30 so it would be pointless to go back to work. That being said, if I ever had to have a morning appt I would most certainly go to work once the infusion is done. I have always felt fine afterwards but wait and see how it goes for you.

Sounds like you will be going to the clinic on Gilbert Road - they may offer evening and/or Saturday appointments which may work better with your schedule. Here is the link to the BioClin website so you can check it out in advance http://www.bioclin.ca/
HI PattyLynn, I also live in Vancouver and am about to switch from Humira to Remicade. I'm waiting for the Pharmacare approval. I tried the link you included for Bioclin but it takes you to a US medical website. I googled Bioclin but there is no website so maybe the clinic has a new name? My GI doc mentioned there is a clinic in Kits that takes late appointments but no idea where it is. His infusion coordinator will let me know, I guess.

Are you still finding the Remicade works for you? I'm a bit nervous about the possibility of reactions but from reading on here seems that it might not be that bad.
__________________
Dx:
Crohn's Disease
IBD associated Spondyloarthropathy
Migraines
Moderate Fatty Liver

Meds:
5-ASA (Salofalk)
Celebrex
Omeprazole


Previous meds:
Stellara, Cimzia, Simoni, Remade, Humira, Methotrexate, Entocort, Sulfasalazine

Surgery:
1. laparotomy 1986 - Dx Crohn's Disease
2. small bowel resection 1995
3. small bowel resection 2016
12-02-2014, 04:02 PM   #16
Roxymusic
 
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I schedule same way as PattyLynn, 1:00, work in the AM. Bring a snack, headphones, hydrate in morning since they use my hands for the infusion (can't find veins in arm anymore). I sleep for 1.5 of the 3-4 hours due to benedryl pre-med. Never a reaction from Remicade other than I'm more tired than normal maybe just a couple of days afterwards. Nothing that says STOP! I had an infusion at 1:00 yesterday, still at work today.
__________________
DX Crohn's 1971
Crohn's Surgeries 1971, 1974, 1984x2, 1993, 2007,2016
11 Kidney Stones from 1996 due to resections
All the standard drugs/advice from the 70's 80's 90s
Now: Lyrica & Cymbalta (Neuropathy)
Fish Oil, B12 injection monthly
Dec 21 2011 started Remicade
February 2012 off of Pentase!
Nov 2014 Back on Imuran
Jan 2015 off Remicade
Mar 2015 on Humira
June 2016 on cimzia
Dx short Bowel July 2017
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