Am interested in any feedback from those getting Remicade infusions. Have they helped your Crohn's symptoms in any way at all?. Please let me know. I am going to go back to Remicade very soon after about one year and I'd like to know what success people have had with this medication. I am not sure if it helped me previously. Thanks, Lionel
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i have never been on it, but I know someone on it. I was told once you stop Remicaid you cannot go back on it??
Hi,
I was on Remicade for about 2 years and then I developed lupus like antibodies to it. It helped improve bowel control tremendously for me. Loved, loved that drug!! I always thought it was recommended not to go off Remicade if you were on it. That being said, I think you can go off it and restart it but it may increase your chances of developing antibodies to it?!? Not 100% positive and I would never tell anyone not to try it because it was really a life saving/pouch saving drug for me. Best of luck to you!!
I was on Remicade for about 2 years and then I developed lupus like antibodies to it. It helped improve bowel control tremendously for me. Loved, loved that drug!! I always thought it was recommended not to go off Remicade if you were on it. That being said, I think you can go off it and restart it but it may increase your chances of developing antibodies to it?!? Not 100% positive and I would never tell anyone not to try it because it was really a life saving/pouch saving drug for me. Best of luck to you!!
thanks for your reply. Very helpful, best wishes, Lionel
Many thanks for all the info. Best wishes, Lionel
I was on Remicade for 2.5 years, then had a serious reaction. I, too, didn't think once the drug is stopped, there is no going back?
my doctor knows I was on it before, and I stopped it for about one year or so. I presume it is OK to go back on it...hopefully the doc knows what he is doing.
...Lionel
Not all docs know what they are doing. That said, hopefully yours does.
Curious why did you go off for a year?
The risk of developing an allergic - often anaphylactic reaction is strong, but also not guaranteed. There are several things you can do, 1- see if the doctor (and your insurer) is willing to blood test you for antibodies, 2 - make sure you are given premeds, ie Benadryl and Hydrocortisone prior to infusion 3- makes sure they administer at a slow rate to start and up you conservatively ie don't get there late in the day when everyone wants to go home 4- make sure you bring someone, so they can help monitor you. if an anaphylactic reaction happens it can turn bad very quickly 5- know that oftentimes the first resumption infusion is okay but that only serves to awaken the antibodies (even if you tested negative prior) and the second one is the god awful one.
I share all of this not to alarm you but inform you. informed is better than going in blind.
good luck.
my dx morphed to crohns pouchitis and Remicade worked great for me for a couple of years, I am now on Humira weekly with a side of Methotrexate and it helps. Better than what it was before. Remicade or any of the biologics can be true life changers. Good luck.
thanks for all your replies...will have to wait and see what develops. Best wishes, Lionel