Remicade (Infliximab)

So basically my doctor is insisting that i start remicade, im a 20 yr old male. ive heard lots of bad things about it but its starting to look like my only option. i was wondering if i could get opinions from people who know about it or have taken it. did it work? what were your side effects? would you recommend it? please help!

Try this post:

https://www.healingwell.com/community/default.aspx?f=17&m=1875736

which is an (unfinished) update on the medications thread, which you can see in my sig.

Best wishes,

Ivy.

Music Man...

Be careful how much you read into this medication. Keep in mind that ALL medications have risks, even things like asprin and tylenol.

Often on the internet you will get a very biased view, often people don't take the time to post positive reviews of something like this because they are just out there living life. You will often hear more negative feedback than positive. That doesn't necessarily mean that more people are having reactions, just that more comments are made by people with a negative opinion.

Anyway, my two cents:
I was put on Remicade in 2002 as my last option before surgery. It was Remicade or loose a couple of feet of gut...
Remicade worked wonders! No surgery, and I was out of the hospital in a week. I never had any reactions to any of the infusions. After being on it for about 3 years it started to not work so well. I went into a full flare and back in the hospital. The option was to try a double dose of Remicade. We gave that a try and it was back working again. Keep in mind that that was a DOUBLE dose, twice the recommended amount. Even with twice the normal amount in my system, I didn't have any reactions in that 5 years, not once.

I was on Remicade until just earlier this year. With a few very minor exceptions, I enjoyed long periods of symptom free living. At times it was easy to forget I even had Crohns. I came to enjoy my infusions, the RNs were nice, and it gave me some time to sit down and relax. During that 8 years I traveled, I went camping, I had a normal job, started raising a child and did everything I wanted to.

I know that Remicade did a lot for me. I'm thankful I had the opportunity to get 8 years of relief out of it. I'd encourage you to give it a try. Don't let others opinions keep you from trying something that may work very well. Keep in mind that EVERYONE is going to have a different opinion and experience, and ONLY you can decide for yourself. Don't let others scare you away from it. Personally I think that Remicade is MUCH safer than prednisone. Given the choice, I do just about anything other than that.
If Remicade doesn't work for you, don't sweat it, there are other variants, like Cimzia and Humira that could work just fine.

Also, you CAN go back on Remicade if you stop it. It was thought at one time that once you were on it and stopped, that you couldn't go back on it again. Not true. Some build up antibodies against it, but not everyone. Your GI can do a test to see if you have the antibodies in your system to cause an issue. If not, you can go back on Remicade. If you can't go back on Remicade, there are still many options, like the Cimzia, Humira, and the other "-mab" family of drugs.

Now for the small print:
I was on Remicade for 8 years with NO issues. Earlier this year I had to stop taking it because of what the doctors thought was a very rare reaction to the drug. According to them I was the 14th patient on Remicade world wide (out of millions) to develop a very rare side affect from it. I came down with something called Guillian-Barre Syndrome. Good news is that it has completely gone and I am back to 100% with no issues. Not sure if I'll go back on Remicade any time soon, but if I do, I'll be looking forward to the relief it gave me.

mmckenna, thankyou for the post. thats really weird my name is Joey. Well i have a little while before i make a decision about the remicade and i appreciate the information. another concern i have with remicade is the expence. I have tricare military insurance but i heard the infusions are like thousands and thousands of dollars. as i havent been to work lately i am limited on money. Someone recently made the suggestion that i should apply for disability benefits. i think i would qualify but im afraid of what that might do to my future. im very new to this i was only diagnosed last year. im kind of still realizing this is a LIFElong illness

Remicade gave me my life back, until Remicade made me healthy again I never realized how much pain I had become use to living in. So for me I am a huge fan of remicade.

Music Man,

Remicade was the only medication that my son was on that actually helped him.  In fact, it put him into remission.  Only thing to be aware of is that you might have to tweak the dosage.  They start with a standard dose and then may have to adjust it later on.  Ben ended up on a double dose every six weeks.  He had no side effects.

Check out the Remistart program.  The makers of Remicade will pay for a large part of each infusion - you just have to mail them the EOB statement from the insurance company.  However, it is important to sign up for the program BEFORE you have your first infusion.  I made the mistake of waiting until I received the EOB from the insurance co. and then I tried to sign up, but they wouldn't cover that first infusion because too much time had passed between the date of the infusion and the date I signed up.   I think they might have other programs as well.  I found them very helpful.

Ben has now switched to Humira, but solely for the reason that he is still in high school and he just couldn't keep missing a day of school every 6 weeks.  It was causing him a lot of stress.

Best of luck to you,

Nancy (son Ben,16,CD dx at age 11;  Humira, Milk Thistle, probiotic)