Remicade

Hi all,

I'm Marissa, I'm 23 and I have Crohn's...diagnosed December 2007. I'm going to be starting Remicade the end of the month. I've been in Prednisone, Entocort, Lialda, and 6mp...what should I expect with the Remicade?

Hi Marissa,

It is a scary thing to do for the first time. My daughter started Remicade almost 2 years ago and we really researched and read everything we could to decide if that was a reasonable risk. She is 14 and has never had surgery so we weren't sure if we wanted to go full out and start Remicade. Everything we read says to stay ahead of the game, so to speak. It's better to keep yourself from surgery and flares/fistulas then to try and get out of them.

We get the infusions at Children's Hosp. I know the older people on Remicade can go to an infusion center to receive their treatments. They start out with Tylenol and Benadryl. It makes my daughter kind of sleepy and groggy, so you can't really expect much out of yourself after an infusion :) They check your vitals every 20-30 minutes to be sure you aren't reacting. My dd has never had an allergic reaction. The first infusion took a long time because they go very slowly and observe how you are doing. After the 3rd infusion (those first few are induction infusions and closer together) they can go more quickly. We get to the hospital about 10 and are home about 2pm.

They say you can have more infections on Remicade because it does weaken your immune system. In almost 2 years she has had only 2 sinus infections and last summer after camp she had a cough for a couple of months that finally resolved with a dose of antibiotics. Not too bad for someone with a weakened immune system. Some strange side effects like minor rash, a bit more acne, and some tiny blisters on the bottom of her feet. It really is different for everyone, but overall we are glad that we have the insurance to pay for Remicade and that she is staying in remission for now :)

I notice that most people on the internet will report Remicade horror stories, so beware. Don't read too many like I did. I was so nervous for that first infusion because of all the reading I did! It's good to be informed, but you don't need to be frightened!

I hope it goes well for you and the Remicade will cause you to go into remission

I started taking Remicade when I was 26, and was able to take it for about 6 years. 

The whole ordeal of taking an IV medication over the course of a few hours is just so different than taking oral medications, that there was some nervousness on my part the first time.  The needle/IV part didn't bother/worry me, but I was concerned about any side effects.  Would it make me tired?  Would I feel different afterwards?  Would I need to go home and rest, take the rest of the day off.  Would this work for me? 

I noticed nothing in terms of negative side effects at my first several infusions, and was able to freely enjoy the rest of my day.  I don't recall feeling the medicine go in or any pain or discomfort during the infusions.  Perhaps once, the IV solution was a little cool, and I could feel it at first, but that was never really a problem either.  I'd say I noticed improvements in my condition in 1-2 weeks after an infusion. 

My first infusions were at a local hospital cancer center, and I was always the only Crohn's/Remicade patient there.  Everyone else was there for chemo.  A few years later, and I would suspect still today, there were frequently multiple Remicade infusions taking place at the same time that I was there. 

Definitely take something to read or do to help pass the time. 

Good luck, and I hope this treatment works for you like it has so many others!

Hi MV4700, welcome to healingwell.

I am 25 and have been on remicade for about 18 months. It has completely changed my life. Before remicade I was in a 4 year flare, had two surgeries, an abscess and fistula. The abscess required multiple surgeries and would not heal until I was on the remicade.

I felt drastic improvement within hours of my first infusion, and my surgery began to heal almost instantly!

It has been a life-saver for me. I wasn’t nervous about the infusion… I was nervous about whether or not my body was going to ‘reject’ the drug – but so far (touch wood) it hasn’t. I am supposed to be on combination therapy (remicade + 6MP) because my crohn’s is so aggressive, but I can’t handle the 6MP, going to talk to my GI about this next week…

 

I would say give it a shot and welcome it with open arms – relax about it, you will be in the care of skilled nurses and they will watch you very very closely especially during your first infusion. Good luck!

Was on Remicade for several years, it never really worked and finally quit working and I had a reaction and had to stop. They gave me the tylenol and benedryl IV before my infusion and I went regularly every 4 weeks. I hope you have good insurance as it is very spendy. Good luck.

Dang I should of proof read this first LOL!

I have been on remicade every month for 7 years now and would be happy to answer any questions for you. Most of the above posters have already given you a good description of how you receive the med and what to expect. Make sure to plan a couple days of rest after the infusion so that you can recover. Most people are able to get on with their lives the next day or 2 without any other side effects. Because it is a powerful med, there is always the possiblity of powerful side effects but they are very rare.Most of the side effects are flu like symptoms for a couple days and a headache. I am usually very groggy after each infusion because I am premedicated with 50 mg of IV benedryl before the infusion. By the end of the infusion though, I am awake enough to drive myself home.
Don't scare yourself by reading all of the horror stories. Sure there are some people with bad experiences but these are extremely rare considering the amount of people that are on the med for multiple conditions. Trust your doctor in that they would not put you in a situation that will make you worse. If they are recommending remicade, that means that your disease has gotten pretty severe and this is a last option. I am more than happy to answer any other further questions that you may have.

let us know how it went

Hi I have been recently diagnosed with CD in Oct. 2010 and have lost large amounts of weight and have been put on Imuran 75mg without too much success, I have now done 2 infusions of Remicade and from my experience it is like most other people. I am 16 so I go to Children's Hospital for my infusions in Vancouver. The GI team has been great and very confident in this drug for me. I go to the MDU to get the infusion, when I go in the nurses are always so nice and helpful, if you have any questions don't hesitate to ask. My first infusion they came and talked with me a little bit, verifying my name and birth date and all the information my specialist had given them. For me, I wasn't too anxious about the actual drug, but I had been having troubles getting over my fear for needles.. and sadly that was what I was most anxious about. My last IV had not gone well. This time I asked and I was able to have the infusion in the elbow, where you would get your blood draw, a much better area for myself. Both my infusions have taken about 4 hours to start. Because I have lost so much weight they have to wait for me to gain any before my dose can go up, and then faster. They give me a Benydrel and a Tylenol about an hour before each time. After the infusion I have to wait an hour before I can leave. Haven't noticed too many side effects. The only thing is so far, the first 7 days after my infusion my CD has been very active and once I hit that 8th day I feel like I am in remission in comparison. Worth it for me so far, hopefully for you soon too.

I hope Remicade works well for you.

My dad just went in today for his first Remicade infusion and my mom called me all worried about the possibility of lymphoma. I think I read some other posts related to this that put my mind at ease - just about every medication has some scary possible side effects. Personally, I find birth control pills to have scarier potential side effects and are likely far more commonly used. I have a lot of confidence in my dad's Dr, hear he is the best in the state (says my Father-in-law who has been going to him for a while.) Mom said Pops wanted a burrito for lunch after treatment and seemed chipper already. Pops has lost about 30 pounds in 3 months on this last flare and nothing seems to be working so we're hoping and praying Remicade does work.

All votes of confidence are appreciated. Best of luck to all.