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I have Ulcerative colitis, am experiencing a bad flare up and my GI Dr highly suggests I start Remicade infusions. I have been on mesalamine (Lialda) for years. Currently taking hydrocortisone enemas and prednisone and mirilax everyday for my flare up right now. What is your experience with using remicade? Are there any long term effects you are seriously worried about? Did it help immediately? Is it very expensive if insurance accepts it? Should I start taking this even though I am on the mild to moderate side of UC, but my flare up is not resolving? Any thoughts on this or your experience would be greatly appreciated.

Reply posted for davidwills.

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Reply posted for shannonmiller.

Good afternoon I've been on various medications and I agree I've also been on remicade and it was beneficial I agree with your gastrointestinal doctor you should give a try it's been a miracle drug for a lot of Crohn's disease patients 

Reply posted for shannonmiller.

Remicade worked very well for me for 9 years before failing. Hope it does the same for you!

Reply posted for shannonmiller.

Remicade can be highly effective in managing UC, especially in cases where other medications like mesalamine and corticosteroids have not provided sufficient relief. It may help induce remission and maintain long-term control of symptoms 

Reply posted for shannonmiller.

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• ywest
  Joined Aug 22, 2023

Reply posted for NourishNNature.

Remicade takes a bit before it actually starts working it's been a miracle medication for alot of patients 

Reply posted for shannonmiller.

I will never touch Remicade, Entyvio, or any immunosupressant ever again. Prior to the infusions you'll receive a paper for legal reasons and in fine print, you'll read that you'll be more susceptible to bacterial infections. Sure enough I got a bacterial infection two months after my infusions and after being relieved from the hospital, my gastroenterologist wanted to put me back on immunosupressants. It did not make any sense what so ever, and I chose to left the doctor's office permanently that day.

Reply posted for shannonmiller.

I started Remicade right after my 2nd bowel resection for Crohn's. I had also developed UC and for me it took a few infusions before my symptoms calmed down but I am on the moderate to severe side of things. 

Once it started working I felt wonderful! The day of the infusion I was very tired and would sleep afterwards but other than that I had no problems or side effects. I have commercial insurance so my doctors office set me up with the Jennsonn (sp?) copay assistance which helped me cover the costs. 

After a year of being on Remicade my insurance then said I had to switch to a bio similar and I went on Inflectra. That was really bad for me and I had all kinds of reactions while on it and when I stopped. 

Reply posted for Secrews1.

Oh, I forgot:  initial side effects were mild at best, but I noticed I started getting really dizzy with the infusions and my GI at the time put me on a steroid to help, since then no issues.  I also take a pain killer (tylenol) and allergy med (zyrtec) and I haven't had any major allergic or other imeediate reactions.

Also, some tips for getting the IV:  drink A LOT of water at least a day beforehand, cut caffeine; it helps the needle go in a lot easier, and you can usually ask the nurse to put the IV in a different place (I always go for the crook of my arm because the veins are better than in my hands and I bruise a lot less).  Get plenty of rest after bc you will be tired!  Some infusion clinics will offer Saturday appointments, which I would suggest looking into because it does make a big difference, as the infusion is kinda a whole-day affair.

Reply posted for shannonmiller.

Hi hi!

So, I've been on remicaide about 10 years.  I didn't start having side effects until about 2 years into treatment.  I started having severe sinusitis and skin issues (frequent skin infections, both fungal AND bacterial).  Get ready to get sick a lot and when you do get sick, you get sick for a long time.  Try taking supplements to boost your immunity, obviously always wash your hands, and I've found bathing with antibacterial soap helps keep the germs away.  Just keep an eye on your overall health and you should be okay, and NEVER be afraid to let your doctor know of any changes!  

From a Crohn's perspective, I've been in remission for about 5 years, so it is effective but it takes time, maybe a year or two for symptoms to really get better.  I'm now having to fight with insurance to stay on remicaide but I think it's a losing battle at this point, so be prepared for that in the future.  Any tests for any secondary conditions you get, keep records!!  You might be able to use them in the future.

I wish you the absolute best of luck, and hang in there!

Reply posted for shannonmiller.

I have had at least four Remicade infusions, two were double dose.  No side effects whatsoever. I was given Remicade because I underwent cancer treatment which included Keytruda an immunotherapy drug.  I don't have a colon, was removed 20 years ago due to UC, but the "cuff" that was left with my j-pouch was severly ulcerated. After I could no longer tolerate the Keytruda, the docs waited a few months and are giving me Remicade infusions.  Its been about 6 months but they do work.  Not right away, but the drug works. Good Luck.

Reply posted for shannonmiller.

Please remember Everyone responds differently to medications for me with remicade I would get really tried like a hangover I would also have a migraine as well as stomach pain which usually died down within a day or two I know a lot of ibd patients and friends who've responded really well to remicade I wish you all the best