I failed all other drugs too and am currently "failing" remicade as well. I have had 6 infusions. I didn't notice any side effects until about my 4th infusion. I have hives and TERRIBLY itchy skin. It's also making my skin wrinkly. It's not good. However, remicade can be a miracle drug for some people. It's not as scary going onto it as you think it will be! Good luck to you.

My son just started Remicade 3 weeks ago and so far so good.... I know it may be awhile before side effects pop up but he has had none so far and he had a flair start up the day before his first infusion which just went away the afternoon after the infusion.... it was the shortest flair he has had in 9 months. The side effects scare me too but he was so Ill he couldn't hold a job or start college so just to have 3 weeks without vomiting and pain has been great for him!

My 8 yr old daughter has been on remicade for 1 year & doing great.

I find Remicade far more tolerable than prednisone. I hate the side effects that come with all the medications offered for Crohns. There is no cure for Crohn's or UC so the idea behind the treatment options is to reduce symptoms, improve quality of life or to bring on remission. Its a balancing act. I have a tendency to avoid medications, because of my hatred for the potential adverse reactions, until I am so flared up that its hard to treat. I am getting ready to go back on Remicade for this flare-up and I usually find improvement in my symptoms within the first 2 months. Best wishes!~Sue

I was hospitalized in early January and nothing worked for me including IV steroids and Predisone. Remicade saved me from surgery and I have been in remission since late January. My bigest fear is it will stop working and I will have no other option then surgery. No side effects to speak of (Thank God and touch wood)

Humira has the same disclaimer/warning. If insurance will cover it, I'd try it.

The thing to remember is that the constant inflammation from IBDs is also thought to be linked to cancer....so....who really knows.

Do you have Crohns or UC? I have Crohns and take Humira which is in the same family as Remicade but a lot easier to take. I have had no side effects in two years. I inject myself two times a month. Ask your doctor about Humira. If you have Crohns and a lot of scar tissue built up, these drugs do not work well. For me surgery was the best option to get the scar tissue out then to start Humira to prevent my Crohns from doing damage. It seems to be working good for me.

My sister has been through the ringer with Crohns finally afters several surgeries Remicadehe has been on it 10 years or better - she is a ball of energy - there's no stopping her!!! Thank you for Remicade!

Another option is keeping a food diary and figuring out if you have triggers to flares that are dietary... that was my choice when drugs just weren't helping - Hope something helps you...
My triggers are dairy and sugar (too much or high amounts) avoiding these I been able to live pretty normal - no one knows I have UC/CD unless I tell them,,, Good luck feel better!

Sorry I didn't specify, I have UC. Thanks for all of the info, I know it will help in making my decision.

Hey Melanie -
I've posted this thought on other similar posts and I'll post it here too. ALL of these drugs have the possibility of something quite scary happening, but why worry about what MIGHT happen later when you can't live your life now because of the flares?
I probably had one of the worst possible experiences on Remicade with just about every side effect imaginable (including a recent lymphoma scare, which in fact turned out to be Celiacs and not related to Remicade at all), and I still don't regret that I tried it before having to resort to surgery. It's a drug I hate, but it was the best option to try at the time and I had to give myself the chance that it might work before moving on down the list.
If you do try it, remember that once you start you can't stop it when you get better and then start it up again, as it won't work because you build up immunity to it once it is stopped. So you have to be in it for the long haul. Also, make sure your doctor gives you a TB test prior to putting you on the drug to avoid some of those nasties. I hope whatever you choose you do so knowing that it's the right thing for you, and I hope that it works. Good luck, Kelsey

Hi there. I have Crohn's Disease and corrisponding arthritis. I had great success with Remicade. I was put on it because I could no longer take prednisone due to it causing major hip problems. I had not side effects from the Remicade. I was on it for about 3 years and have been in remission for about 5 years since. One thing to talk to your doctor about if you decide to go on it, is benadryl. My GI had me take 50ml of benadryl and 2 Extra Strength Tylenol one hour prior to each treatment. These helped to minimize the possibility of an allergic reaction, like hives. Personally, remicade was a miracle drug for me. I would recommend that you at least try it. I know the list of side effects can be scary and sometimes even terrifying, but I will tell you the same thing my GI said to me. Look at the quality of life that you have now. Do you want to continue this way? If your quality of life is poor, then quantity really isn't that important. Myself, I would rather live a shorter life with a higher quality than a longer life with a low quality. Just my experience and opinion.

I wish you the best of luck with your decision. The best way to approach it is exactly the way you are doing. Get as much info as you can so that you can make an informed decision.

Good luck and take care of yourself.

Well, I had Remicaid last year at the end of June. I really didn't notice anything wrong until July the 4th. I worked my shift and was feeling a bit achy and a bit feverish. I got off work at 2300 drove home and my shoulder started to ache a bit. Figured it was from an old injury the year before I seperated my shoulder on my motorcycle. When I got home I checked my tempreture said 99.0 so I took some Tylenol and went to bed around midnight. I woke up in a cold sweat at 0300 and I had excruciating pain in my shoulder. I checked my temp 103! I called my doc and she said go to the ED. When I got there my body started tightening up the pain was so bad I just curled up into a ball on the stretcher. Turned out I had septic arthritis of the shoulder due to the Remicaide killing my immune system. I spent the first four days in the hospital in so much pain I couldn't even get out of bed. Everytime I moved it hurt so bad I wanted to die. Was on IV antibiotics for 2 months and got alot of scar tissue built up around that shoulder. I finally had surgery on it about 3 weeks ago.

My GI said I could no longer do biologics. All that is left is xiafaxin I hope it works!

Remicade has literally SAVED MY LIFE (I have had UC for 3 years / arthritis for 3 months). I was very concerned about the increased cancer risk at first too, but my GI says I have more of a chance of getting hit by a car than I do getting cancer due to the increased risk related to Remicade.

PLUS, my "quality of life" was so poor without it and I was so miserable... I would rather live today and deal with tomorrows issues when/IF they come. BEST OF LUCK!!!

P.s. I discovered a program called RemiStart. It's a reimbursement program that will pay for part of your drug/infusion costs. They have reimbursed me THOUSANDS of dollars. There are certain qualifications that you must meet- see their webpage:
http://www.centocoraccessone.com/pages/remicade/patientassist/intro.jsp

Again, good luck!!!