Crohn's Disease Support Group

My daughter recently started on remicade. Prior, she was taking mercaptopurine and pentasa. The mercaptopurine was stopped before the remicade, but she is still taking the pentasa while on remicade. Does anyone else take these two together? I know there are bad side effects if one takes mercaptopurine and remicade, are there any known bad results if one stays on pentasa and remicade? Or is that known to be ok? I have lately been thinking about this and wondering if it is best to stop pentasa or keep her on it.

My son is on Mercapturine (6MP) and it's not working as well as we hoped. Doctor at Johns Hopkins wants to start him on Remicade along with 6MP if his symptoms worsen. What side effects are you talking about? Now, I'm nervous because she mentioned another med we could try but couldn't mix with Remicade....I think it's Methotrexate?

My daughter's doctor mentioned to us that it is not a good idea to take 6MP and Remicade together, as it increases the risk for cancer, and there have been many cases where taking the two together are resulting in the patient developing cancer. Remicade itself increases ones risk, but adding 6MP to the mix raises that risk even higher, which no one wants. Also, just to inform you as well, it seems, that the majority of those cases are boys. I would talk to your doctor about this, from the information that I was getting, I wouldn't mix the two. Also, this doctor is new for us. Our previous doctor was not doing much help, and with being under this new doctor for 6 days, my daughter was doing better than she had been these past 3 years. I am loving this doctor, so far I trust her judgment. I have not done my own searching though on the mixing of 6MP and Remicade. I have never heard of Methotrexate.

I have been receiving Remicade infusions since 2007. I also take Lialda (similar to Pentasa) and Imuran and have been taking all this time. My doctor never said anything about there being any issues with taking all of them at the same time. I would discuss with your doctor. Your local pharmacist is also a good resource when it comes to medication questions.

Thanks for that info. I am assuming it is ok, as our doctor made a point to advice against 6MP and Remicade, but not Pentasa.

I don't think my son is going to have much choice as he is allergic to Asacol. Thanks for the info...I will share it with my doc.

In 2000 I had my first treatment of Remicade, a couple of weeks later I had to have an operation as I had a fistula.

Years later I was finally diagnosed with Crohns again, although I knew I had it years ago, but my former doctor claimed I had thickening of my Colon.

I now have a new doctor who gave me a colonoscopy and low and behold I was right.

In January this year I had the second treatment of Remicade, 11 years after my first.

When I drove home I went straight to bed and slept from 5pm to 11am the next day. A phone call woke me and I fed my pets and ate and drank a little bit and slept again until the next day.

This heavy sleeping went on for about a week, and then I had major big time hives. More than elephant hives, these were dinosaur hives. I looked like a giant relief map from my thighs to my forehead.

I was feeling weak so I had an ambulance drive me to the hospital where I told them about the Remicade and they told me that if it had been to the Remicade I would have reacted. They gave me i.v. and benydrol and I again slept for a few hours. My daughter was called and took me home.

A little more than a week later I went for my second treatment and told my nurse what happened about my hives.

I was being treated with Remicade for a couple of hours when my neck hurt and then the pain traveled down my back, and then my arms started burning and itching.

I felt really weird, I had to go to the powder room and my heart felt like a fish that was landed on a boat floor, and I collapsed. I don't remember much, but someone told me my heart stopped, and called my daughter who raced down to make sure I was okay.

Needless to say I will never have Remicade ever again, it almost killed me.

My advice is to listen to your instincts. I wish I had not listened to the doctors in the Emergency when I first had the hives.

Wow..that sounds scary! Glad you made it through all of that. That was one of my worries starting Remicade, was for her to have an allergic reaction. So far she has not had anything near...so I am thankful. She gets a bit tired, but not bad, and that seems to be about it. She bounces back pretty quickly, and is playing like normal the next day. I think kids tend to bounce back easier too though. What would have some of us wiped out, they are pushing through as hard as they can to be able to play with their toys! She had her third Remicade already, and it went well, aside from them having trouble getting the IV in place, which turned it into a nightmare for her. So I am hoping this next infusion will go smoother for her. IV's and 8 year olds don't mix!

It took me three treatments to show how bad it was. I suggest you have Benedroyl or however you spell it near you all of the time.

My son took 6MP at one point. He's taken Pentasa also. Currently, he's doing Remicade infusions every 8 wks. He started Remicade a year ago. He's never taken anything together - just one treatment at a time. He had bloodwork done at his last infusion, and now his numbers have come back "whacky". Went to see his GI, and he had to have a Prometheis bloodtest done that will tell the whole story. Remicade may be out as a treatment too. (He did really well on that, but it has stopped working). Don't know what the next course of treatment will be. It's been a roller coaster ride so far. Good luck to you & your daughter.