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Starting Remicade Tomorrow

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Ulcerative Colitis
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Posted 8/4/2014 6:14 PM (GMT 0)
I'm starting remicade tomorrow (if remicade fails then entyvio is next on the list) morning at 8am. Uceris and pred were not really putting me back into remission but just helping me manage symptoms. However once I would taper off the steroids I'd go right back to square one. Figured after so many years of going on and off pred it's time to try something else in hopes of achieving remission and allow my gut to heal.

There's a bit of mixed feelings here when it comes to starting this new therapy. I'm a little nervous about starting down the biologics route but also I'm sort of excited that "maybe" I can get some relief and get back that social life that I used to have. Now days everything revolves around a restrooms. I have to make sure I use the restroom before leaving the house in the morning, I have to make sure I use the restroom before leaving work, I have to make sure I use the restroom before going to the gym, or dinner, etc. etc.. I'd like to one day not have to think about using the restroom before doing something.

Now here are some questions I have for all the Remi-veterans:
1. My infusion is at 8am. Should I eat breakfast?
2. I was told I can drive home afterwards. Should I have a backup ride just in case?
3. A lot of people are given benadryl before the infusion.. If the nurse doesn't give it to me should I ask for it?
4. After the infusion do most people just go about their day like normal? I ask because after the infusion I planned on going into work to attend some meetings.
5. Anything else I should know?

Thanks for reading.... smilewinkgrin
Posted 8/4/2014 6:28 PM (GMT 0)
1. I usually didnt eat before my infusion because i didnt wanna have an accident on the way there- took an hour to drive.
2. I was unable to drive there and back.
3. I was never given any pre meds.
4. I had terrible migraines for three days after each infusion so i was on the couch the whole time- no lights and the curtains drawn.
5. Nah. You just sit there for 3-4 hrs and read/watch tv. Pretty uneventful. You dont feel the medicine- doesnt burn at all.
Posted 8/4/2014 6:37 PM (GMT 0)
1. Breakfast is fine, wont affect the infusion
2. You may want a back up driver for the first one, just in case you have a reaction, but beyond that youll be ok by yourself
3. Id hold off on the Benadryl for the first one. If you get a head ache, ask for it the second time.
4. For me, I was completely normal after my infusions; as though I was just given saline. I almost always had a soccer game afterwards and was able to play just fine. Others are wiped and some have headaches. Use this first infusion as an indicator of how you will react in the future.
Posted 8/4/2014 6:50 PM (GMT 0)
Been on Remicade since 1/31/14--have had 5 doses:

1. I eat a light breakfast--which I usually do. The office is about 20 minutes from me. I usually use the bathroom when I get there--whether I feel the need to or not. I've not had to use the bathroom during the infusion, but if I did, it's not a problem there.

2. I've always driven there and back with NO problems. I guess maybe for the first time or two, if you're worried have a back-up ride. Driving home, the worst I've felt is a mild headache--and I don't always get that. For some reason, it kind of reminds me of a headache I get after a routine dental appt. (One with no work other than cleaning.)

3. They always give tylenol and benadryl as premeds.

4 & 5: By design, I originally took off the first two infusions, since I didn't know what to expect. I actually like my "Remicade Fridays" so much that I've continued to take the entire day. (I have tons of time built up.) To be honest, the only side effect I seem to get is later that afternoon or evening (my appts are about 8am) I feel pretty fatigued--more so than normal. If I had to, I could easily go to work--but why bother at that point. They get more than their fair share out of me!

I really have learned to enjoy my 3 hrs or so in "the remicade room." There are always two other patients, and all of them have been great to hang out with. The nurses that work in there really know the patients--and are fun to chat with about everything from our kids to plans for the weekend. I also "unplug from work"---meaning i always turn off work email--100% of the time. (My feeling is that my job didn't cause my UC, but it did exacerbate it--without question. Seemed counter productive to be working when I'm there.) When we're not chatting in the room (patients and staff), I listen to music and surf on my phone. (Gotta get an iPad at some point!) The chat in the room with the other patients can be about anything--and occasionally our diagnosis--but not usually.

As I'm sure you'll see here, your mileage may vary. :)
Posted 8/4/2014 8:21 PM (GMT 0)
Now here are some questions I have for all the Remi-veterans:
1. My infusion is at 8am. Should I eat breakfast? I do without issue. If you are worried about accidents on the way to the infusion center then you can skip breakfast or take some Imodium or something. While you are at the infusion center, you have ready access to to a bathroom, the IV bags are on wheels, so you can go to the bathroom as often as you need to without issue.
2. I was told I can drive home afterwards. Should I have a backup ride just in case? Remicade itself does not make you drowsy, so you will be fine driving home yourself. Be careful with your premeds, as premeds can most certainly make you drowsy. Premeds consist of tylenol and some anti-histamine medicine (usually either Claritin or Benadryl). Benadryl can make you drowsy. Claritin will not. I always take Claritin. Premeds are optional, you can decline them if you wish.
3. A lot of people are given benadryl before the infusion.. If the nurse doesn't give it to me should I ask for it? See above, Claritin is better than Benadryl as it doesn't make you sleepy. Premeds help avoid infusion-related side effects, which include headaches. If you opt out of the premeds, and encounter a side effect during infusion, they'll slow down the infusion rate, give you tylenol and an anti-histamine, and then ramp the rate up again once those premeds have taken effect. Not a big deal really.
4. After the infusion do most people just go about their day like normal? I ask because after the infusion I planned on going into work to attend some meetings. Yes, I've returned to work afterwards without issue. There is no sensation at all during or after a remicade infusion. Again, benadryl can make you drowsy, but everything else is fine.
5. Anything else I should know? Bring a book, kindle, smartphone, tablet, knitting or some other form of entertainment along with you as infusions can be quite boring. You sit there 3 hours, so make the best of it and relax and get something fun done. There is no pain, other then a quick prick of the needle when the nurse sets the IV (no worse then a blood test or shot). And a tug when she removes the IV at the end, and bandaids it, pretty painless.

I get my infusion done at my GI's office, so it is all patients with Uc and Crohn's in the same room. Usually there are a couple people to talk with, we commiserate about uc and talk about diets, supplements, and other things we've tried, what works and what doesn't. Generally a good time, and it is fun to talk with people who get the ups and downs of uc (e.g., have pushed a spouse off the the toilet because they need to poop NOW! lol).

I've heard that those that go to a hospital to get their remicade are often in a cancer ward, or with people who do not have uc. More boring if that is where you go.
Posted 8/4/2014 10:36 PM (GMT 0)
Everyone is different but I used to get EXTREMELY tired after an infusion. It usually lasted for about 24 hours so it wasn't just from the Benedryl but from the infusion itself. So just keep that in mind if you plan on going to work and having a hectic day afterwards. Perhaps for the first time plan on going home after to see how you feel.

I would always break out with a mild case of hives during an infusion so the Benedryl was very helpful to me. I always drove myself there and home no problem with that.

Good luck!
Posted 8/4/2014 10:42 PM (GMT 0)
Now here are some questions I have for all the Remi-veterans:
1. My infusion is at 8am. Should I eat breakfast? Yes. You can also take a snack in case you get hungry during the infusion. My doctor's office has drinks (ginger ale, water, soda).
2. I was told I can drive home afterwards. Should I have a backup ride just in case? The benadryl made me super sleepy. So my dad drove me home.
3. A lot of people are given benadryl before the infusion.. If the nurse doesn't give it to me should I ask for it? I was always given benadryl (via the iv) and tylenol before the remicade.
4. After the infusion do most people just go about their day like normal? I ask because after the infusion I planned on going into work to attend some meetings. I was always super sleepy (assuming the benadryl) and chilled the rest of the day. I see a lot of people that work on their laptops during infusions and I am guessing they head back to work afterwards.
5. Anything else I should know? Remicade takes awhile. I would definitely bring a book, your laptop, phone, something to keep you entertained! I always bring my earbuds b/c I always get stuck next to someone that wants to chat. The infusion room at my doctor's office has a tv and a decent magazine selection. Some people nap.
Posted 8/4/2014 10:48 PM (GMT 0)
I was super nervous and super excited my first infusion. So nervous I could't sleep the night before. My GI always had us take benedryl IV first and tylenol - so I fell asleep about 20 minutes into it.

After the first few the whole thing becomes like nap time, or reading time. It actually a welcome break from work. I drove to most appointments, and home, though it's for sure better to get a ride. Most won't let you leave unless you sign out saying you have a ride or wait an hour. Every clinic is different though.

Good luck and I hope it works!

PS - I didn't eat breakfast before, but to celebrate on the way home I had a grand slam kinda breakfast, haha. Was good. And the next day the reaction wasn't as bad as it should have been.
Posted 8/5/2014 2:25 AM (GMT 0)
Everyone thank you so much for all the info! I greatly appreciate it. I'm pretty anxious now and can't wait to get this thing started. I've decided to cancel all of my meetings tomorrow and just go home after the infusion and relax. I'm going to use tomorrow as a bench mark to see exactly how my body reacts to the infusion both during and after.

The infusion center is actually in the same building as my GI. I actually switched GI's who was in a major hospital to another GI in a private practice mainly because I hated the hospital environment and the lack of interpersonal communication. I always felt like I was being rushed out either by the doctor or the attending. This place is different I always have communication with the doctor and never feel rushed out whatsoever. I haven't seen the area where the infusions are given but I was told it's nice and they have wifi. :-)

I'll have my laptop with me so I can browse the web, answer emails, update this forum, etc.. Anything to help the time go by.

I'm very grateful to have a community of people I can ask questions to and who can actually relate to the things I'm going through. Thank you.
Posted 8/5/2014 2:37 AM (GMT 0)
Hi! Sorry I'm a bit late with the replies as people have already given you great advice! I recommend eating because sitting there for 3 hours without food can get pretty annoying. I always get very tired after so schedule some time off for napping! I usually schedule mine on a Saturday morning so I have the rest of the afternoon to recover. Since it's your first time they will keep you after to monitor you for side-effects, but for the following times you'll be able to leave after 2 hours. I also recommend getting a ride home after, although I've taken a bus home too. Since it's your first time I wouldn't say no to a benadryl, too. Good luck! I hope it changes your life as much as it changed mine :)
Posted 8/5/2014 2:42 AM (GMT 0)
Thanks Aliseayah!
Posted 8/5/2014 1:37 PM (GMT 0)
I'm currently hooked up to the Remicade and an hour has already passed. So far so good. No allergic reactions, pain, or anything else that could possibly happen. Funny thing is Fridays are apparently their super busy days here at this infusion site. I'm the only person here today!! It's kind of lonely but peaceful. So far I've been able to tap into their WIFI to do some work and answer some emails to pass time.

I really hope this stuff works.
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