Patients Ulcerative colitis
Topic of the discussion
Posted on 3/10/19 6:30 PM
has Anyone used remicade infusion for UC / Crohns?
I’ve been using it for over 2 years but it looks like it isn’t any good for me now, it used to keep me in remission for 7-8 weeks but now it looks like i need an infusion every 5-6 weeks
Beginning of the discussion - 3/19/19Please share your experience using Remicade infusion medicine for UC/Chrons https://www.carenity.us/forum/ulcerative-colitis/your-opinion-on-ulcerative-colitis-treatments/please-share-your-experience-using-remicade-infusion-medicine-for-ucchrons-827
Posted on 3/19/19 4:21 AM
Have you heard of Drug Resistant Antibodies? I hope you are not developing those towards the Remicade. I actually joined the entire site because I developed those towards my Humira injection. Now my doctor has prescribed a Remicade infusion and I am worried that I will develop antibodies towards it and I'm curious about its shelf life. It is pretty much the end of the road for me as far as treatment goes, because we all know how great mesalamine is dot-dot-dot
Posted on 3/19/19 5:26 PM
Yeah i get a feeling that I’ve developed resistance towards Remicade.
mesalamine didn’t do a thing for my condition and now I’m thinking about registering for the research studies where they test newer drugs before its fda approved, any thoughts?
Posted on 3/20/19 2:39 AM
I say that if you think you want to volunteer for a research study that it's an interesting idea. The only problem that I can think of is if you find something that you like and it works for you and then the research study is over and you can't get it anymore, then that could be an issue. And then it could take a long time for it to be available on the market. That's what I have always thought. But that is just my opinion. But if you're feeling kind of at the end of your rope, then do what you think you want to do. 😁
Posted on 3/25/19 8:34 PM
@Desiwitibd I've been on Remicade for over a year but now I've developed the drug resistant antibodies. I was doing it every 8 weeks, then I was supposed to do it every 4 weeks. My doctor called me after my last infusion 4 weeks ago and said I have to come off Remicade because the antibodies are too high. I have an appointment with her tomorrow. The Remicade was working well though, I haven't had any issues or flare ups. So now I'm wondering...are we supposed to keep changing medications every few years until none of them work anymore?
Posted on 3/25/19 9:18 PM
@Capricorn82 it sucks that you’ve developed antibodies for Remicade, for me there’s been no such test that concluded this however my symptoms start getting worse starting week 3-4.
I’m even considering trying alternate medicine route - Yoga, Ayurveda etc.
Posted on 3/25/19 10:53 PM
@Desiwitibd I'm going to tell my doctor tomorrow that I don't want to start a new medication. I need to see if I can do without it. I'm starting yoga tomorrow and I'm going to try accupuncture as well. I'm just going to try the holistic/herbal medicine approach. I really hope you get some relief from your symptoms soon. Please keep me posted!
Posted on 3/25/19 10:57 PM
@Capricorn82 glad to hear that, I’ll be starting Yoga soon as well, a little scared to try accupunture though, look forward to hearing from you about your experience with it
Posted on 3/26/19 3:26 AM
I wish you both great luck with what you have both chosen. I have only been on the Remicade for a few months right now but I am definitely having a flare of my UC. With increase in my diarrhea and urgency. I can't imagine not having some kind of medication to take care of it even if it is Mesalamine. I am really not looking forward to the day that that is my only medication. I have tried acupuncture and do not like it as my nerve endings are too sensitive. It might have a little bit to do with my history of fibromyalgia I don't know. I have also tried meditation and yoga without helping me. If I do not have medication assistance with my Ulcerative Colitis, then I have seven or eight bouts of diarrhea a day, urgency, sometimes even incontinence, and I get blood in my stool. I also have a lot of cramping and pain in my abdomen and my fibromyalgia can sometimes exacerbate. I am really not looking forward to the day that there are no treatment options available to me, and have a lot of worry about it, so I wish you both a lot of wellness and good fortune in the future with your care methods.
Posted on 3/26/19 5:06 AM
@RRCCmom Thank you. I hope your flare up calms down soon and hopefully the Remicade will work long term for you. Sending positive and healing thoughts your way.