Remicade.

[EmAitch88]

hello, all!

i had an appointment with my GI last week. he brought up Remicade out of nowhere. i've had little to no symptoms since i started Asacol and Imuran in 2010. he wants me to get a MR enterogram to see if there is any inflammation. if there is any, he suggests Remicade. even if there is none, he wants me to go on Remicade. -to be as aggressive as possible. and he also says i will be on it "indefinitely". that freaks me out.

he gave me a pamphlet on Remicade but said it was kind of outdated. so i have no idea if everything in there is totally true! ha.

i've done a bit of research (and some perusing about the forums) but nothing compares to a person's experience, who is answering your questions. -if that makes sense? i have questions. and my doctor is on vacation. fancy that.

side effects- i know about the possible skin rashes and basic side effects that have been outlined in every website. i was just wondering if there are any other random ones that peope have experienced? weight gain/loss, hair loss, kleptomania ...anything...?

"loading doses"- what does that mean? is there a difference between them and "regular" doses? or is that just what Remicade doses are called...? and how does it work with your weight and what not.

pregnancy/breastfeeding- one of the only really important things to me in life is being able to experience pregnancy, childbirth, and being a mother. i've read mostly that being on Remicade (any med, really) while pregnant is okay. just putting that out there, though....it concerns me.

lastly, the whole indefinite thing- some people go on it for a couple infusions, others for longer then go off it..then back on it...anyone been on it permanently? what kind of condition were you in? i'm confused that my doctor is set on me being on it forever when he doesn't even know the state of my small bowel right now.....

thank you for any responses! i just really need to know what i could possibly be getting myself into...

 

[KayleighMeek]

Hi remicade for me was the best treatment I have has for my crohns it's the only one that made me feel normal. Before I went on it I wasn't in my worst flare but I had still lost a lot of weight and pain was bad. I can now no longer take remicade as I built up antibodies to it and had an allergic reaction to it. I was in remission for 6 months that is the longest I have been in remmision since being diagnosed.

The loading doses are when they build up the levels of remicade in your body so the first few infusions you will have for example one 4 weeks after then 6 then 8. The times may be different as it was a long time since I had be treatment but after your loading doses you will then usually have an infusion every 8 weeks.
I was also told if I went on remicade I would stay on it as if you stop and start it it increases your chance of building up antibodies and having a reaction, but my body still managed to do that any way lol.
I hope whatever choice you make it helps x

 

[jjk308]

I also built up antibodies to Remicade, after only 2 infusions, and that's pretty common. Fortunately I got in the Humira clinical trials and have been on it ever since with much better results than anything else. Asacol was useless, Pentasa and Lialda (pretty much the same thing) only moderately effective, and I got skin cancer while taking Imuran. Prednisone and Entocort are for short term use only (or should be) and methotrexate can be very dangerous and also causes severe birth defects.

I feel pretty lucky that first Pentasa, then Humira came along after only one bowel resection, otherwise I'd have ended up like one of my aunts, who had to survive on pre-digested food because most of her digestive tract was removed in a long series of surgeries.