Experience with Remicade...

I took remicade for 6 years for Crohns colitis. It was a godsend. I took it with 2 little kids until I switched to Humira when I was pregnant with kid #3. I fully understand the logistics of timing infusions with 3 kids, but trust me, somehow it all works out. I would love to tell you that you'll take it for the rest of your life, but the reality is, that probably won't happen. At some point in time, your body will build up a resistance to it and it won't work for you any more and you'll have to move on to something else. Every person is different, so it could be a year or two or it could be 6-8.

I was fortunate not to suffer any major side effects. The worst thing I developed was a kind of mildly annoying sinusitis. I always felt a little stuffy, but I also lived in Miami and could have had allergies I wasn't aware of. I taught middle school with germ infested Tweens and never got any excessive infections. Just do your due-diligence and wash hands as your normally would and of course avoid anyone who is obviously sick. Don't panic if one of your kids gets a cold. Sometimes when mine get a cold I don't get it at all. And sometimes...it lasts 3 weeks when theirs only lasts 4-5 days. Overall, remicade was great for me. I wish it has lasted longer for me. I did SCD while on the remicade. It worked out ok.

I wish I could help more. Do you have specific questions you can think of? I'm no expert, but I'm happy to share my experiences. I feel like I've been/am in your shoes so I can relate. Hang in there and don't be afraid! Biologics aren't so bad. I've been on them since 1999.

You are fine to drive after taking remicade, it doesn't make you sleepy. There is no sensation at all while getting it. You may not need remicade now, your GI is just mentioning in case you do need it in the future, so you can read up on it.

I've been taking remicade since September 2013. It enabled me to get off of prednisone finally; I was pred dependant. I didn't have blood but had a lot of inflammation and issues with frequency and urgency of bms. I feel the best now I have since before getting uc. I do take remicade with other meds they are listed in my signature.

Remicade isn't anything to be afraid of it's helped a lot of people to get their uc symptoms under control and improved their quality of life. You always need to weigh the risks vs the benefits with any new treatment. 60% of uc patients improve after taking remicade. Side effects are extremely rare with remicade unlike the steroids often used to treat uc flares. The side effect that scares people the most with remicade is lymphoma, and the odds are 6 in 10,000 (or 0.006%); which is not exactly something to loose sleep over. Not everyone chooses to go on medications such as this, surgery is an option too. I recommend you educate yourself and know your treatment options as if and when you need to make these decisions you'll know what you want to do.

Keep in mind, they also monitor your blood very closely (I'm on Humira and when I first started I was going in every week for the first 4 weeks to get blood work done, then it tapers down to once a month for 6 months and then every 3 months) so all you have to do is keep on top of the blood work they order and watch for any symptoms that they give you the list of and report anything unusual to your doc.

Remicade works great for me, been on it since September 2013. I feel fine during the infusion and fine afterwards. I'm not worried about the side effects, which I have none so far.

I've been on a combination of 6mp and Remicade since July 2013. Remicade has helped me better than any other med I have taken since being diagnosed with UC 3 years ago. I get Tylenol and Benadryl as a pre-med before the infusion of Remicade. I am a college student and go to each infusion alone and drive myself home afterwards. I might feel a little tired the rest of the day but definitely alright to drive home. However, every medicine effects each person differently.

I don't have any side effects that I can directly relate to the Remicade either. Someone mentioned sinusitis and after thinking about it, I have been a little extra stuffy since starting Remicade. Other than feeling tired the day of my infusion, I can't think of anything else.

(P.S. My signature is wrong and I receive a double dose every 6 weeks now. Ive also had more than 4 infusions haha)

I am 35 and started Remicade last year. I live in Canada, so it was the only biologic approved for UC at the time. I personally would prefer humira because you inject yourself once a week versus going to a clinic for 2-3 hours for an infusion every 6-8 weeks.

I was terrified if the side effects. I went to a shrink and he made me feel better. He said it's all about probabilities. More patients do not experience those side effects than do and it us catalog strophic thinking to assume you will be one of those people.

As a side, I am failing Remicade. We are going to double my dose and increase the frequency of the infusions. If ghost doesn't help, I will switch to humira since it has now been approved in Canada.

You should educate yourself about Remicade. I was foolish enough to believe that my gastro knew enough about the drug that I needn't worry. I developed a severe side effect (Drug Induced Lupus). I don't want that to scare you or anyone else. All drugs have potential side effects, but I had never experienced any in the past.

Believe it or not, I learned from chat rooms that many gastros don't know enough about what they are prescribing. That's the message I would like you to understand. Before my diagnosis of DIL, I had several weird things happening to me. I couldn't rise from a seated position without help, I used to tell my wife that I felt like I had poison running through my legs and many others. My gastro said, It wasn't the Remicade. My Internist at one point said, I give up. I ended up hospitalized for 12 days (3 in ICU) with many difficult procedures to endure. I wasn't accurately diagnosed until after my hospital stay and I had gone to a rheumatologist (which my internist tried to talk me out of seeing). My message is find a good gastro and educate yourself. Remicade helps many people without issues.

I am now on Humira and have been for 14 weeks, but it hasn't yet begun to work for me. I'm bigger than the average bear and I think they may have to double my dose. I'll try anything before surgery, but that's just me.

I wish you the best.

Post Edited (rumrunner) : 3/22/2014 3:23:04 PM (GMT-6)