Any tips for a first infusion of Remicade?

Remicade infusions take 2.5-3 hours, where you essentially just sit in a chair or can recline in a bed (your choice). Translated: boring as can be. So, make sure to bring entertainment: an e-reader, a fully charged cellphone/tablet, a good book, music + headphones, anything you enjoy and can easily tote with you in a backpack.

When you arrive expect to be weighed or asked your weight. Remicade is a weight-based drug, often 5mgs of medication per kilogram of body weight (in my case 155 pounds = 70 kilograms; 70 x 5 = 350mgs of remicade administered).

You should receive pre-medications before the remicade. They give you tylenol and a choice of anti-histamines (benadryl is drowsy, claritin is non-drowsy). The benadryl will likely make you fall asleep, if you want a nap. Otherwise opt for claritin. The premedications help avoid infusion-reactions, such as a headache or flushed face.

The nurse sets the IV, a tiny needle-prick, and attaches your IV with the remicade. There's no real sensation at all during or after the remicade infusion. Sometimes the saline gives me a little boost at most. The nurse checks your vitals a few times (temp, heart rate, etc.) to look our for an infusion-reaction (they'd slow the drip-rate, if you had one). Once done, the nurse removes the IV, puts a bandaid on, and you can drive yourself home.

The IV is on a wheelie cart, so you can roll on over and use the bathroom as frequent as needed during the infusion. Most infusion centers offer you snacks and drinks. If you have any diet restrictions, then you can always pack a more healthy and safe snack or drink. The hospital I get infusions at now, offers a full meal at no additional charge (if you can stomach hospital food ick lol).

Some report being drowsy following the infusion, so plan on having some down time afterwards, just in case you want a nap when you get home.

I've been on remicade since 2012, achieved a remission and have had no side effects from it. The majority of us do not experience side effects, they're rare. It works fairly fast, and you should have a response in 6-weeks or less. My first response was at week 3, and I had a much bigger response at week 5. Good luck, I hope remicade is your solution.

Another question, iPoop - given you've been on Remicade for a while... how has the rest of your health been? Have you discovered you get sinus infections or other infections more easily? Do you still get a flu shot each year if you did before (I hear we need to avoid that while on Remicade)... Overall much difference in regard to the frequency of other infections since we're suppressing our immune systems?

Be sure that you are well hydrated. This makes placing the IV much easier. Did your dr discuss pre-meds or not? If he did not, I would not take anything until it's cleared by him or the nurses at the infusion center. I did not have to take pre-meds until my 3rd infusion, I had a reaction. They stopped the infusion immediately & called my dr. He said give her Soluable Medrol & Benadryl in her IV. They waited a bit & resumed the drip at a slower rate. From then on I had pre-meds & never had another issue.

People automatically think their immune system will be lowered. That is not true, it may or may not happen. In my case I had fewer sinus infections & colds. The way I looked at it, since I was healthier, the Remicade was doing it's job. Save yourself a lot of stress & not worry about something that may not happen.

You can get a flu shot because it is not a live virus. My gi insists on his patients getting the shot every year. Take some snacks, drink & something to entertain yourself with. You will be fine.

Remicade has been WONDERFUL for me. I started 4/3/17, did my loading doses, then every 8 weeks until September. I was still having some minor symptoms, so we switched to every four, and I went right into remission. I did have a blip with a minor flare this spring, but it’s now under control after adding a second med. Sticking with Remicade as long as I can because it’s done an amazing job of healing my colon!

I’ve done conference calls, emails and put together presentations while getting infusions with no problem. You should be able to work if you premed with Claritin. Ask how to get on the WiFi and have all your devices charged. I was nervous for the first few but was absolutely fine other than one bad reaction to IV Benadryl (it makes me jittery - I do Claritin instead now).

I do labs before each infusion (CBC, metabolic panel, CRP, ESR and Remicade levels) but every doctor and center are different.

No real side effects. I was more exhausted after my first few infusions - like wiped out - but that improved with time. I still don’t make any plans for the night of a treatment, but can usually do low key activities the next day. We all respond differently, so you may be just fine afterwards.

I saw a difference almost immediately after the first infusion, and continued improving until I hit remission. It took 4 treatments to feel significantly better and start forgetting that I had UC

I did have some weird joint pain right after my first few infusions but they went away over time. Nothing significant. I have also (knock on wood) been healthier since starting Remi, but I’m also careful about hand washing and diligent about flu shots. Cuts seem slower to heal, but this is the first winter in many years that I didn’t have a bad cold or flu best of luck!

Thanks, all - this has been great encouragement. I'm hopeful that this places it into remission. Good to know on the flu shot and cuts healing slower... but no need to be a germaphobe! I'll let ya know how it goes and thanks again for the support

Did anyone notice an increase in frequency of bowel movements 24 hours after Remicade? These are not bad BMs - pseudo solid to liquid, but wow it's like once every 1 or 2 hours. Almost like a flushing of the system. Not sure if this is related; thought I'd ask if anyone recalls. Thanks

just wondering how it went? i'm about to get my first infusion this Thursday. were you able to drive yourself there and back when you were done? I'm kinda nervous. hope yours went well.