Is Remicade safe

[Brian'sMom]

My son has only had one infusion. Scheduled for week 2 on Tuesday the 28th,
but unfortunately has a fever today and swollen tonsils with some white on them. I'm scared that he'll miss this infusion during his induction phase. Will a few days or a week delay mess up his remicade response? Also, it caused me to search the internet, which I regret, because I found a site where Remicade lawsuits were talked about. There was an abundant list of people saying that remicade caused cancer. Has anyone in this forum had any knowledge of this? I heard the chances were slim and in children who took it in combination with azathioprine or 6mp. Some of you have been on it for a long time and I bet you know a lot on this topic.
I take my son to the pediatrician tomorrow morning...hopefully he won't need an antibiotic. Thanks for any help and advise you can send my way...

 

[My Butt Hurts]

I have read quite a few things on here regarding Remi and cancer. Of course it sounds scary, and there is a risk with anything, but the risk is quite small. I guess there is alos a risk of cancer of your Crohn's is untreated/out of control as well.
Anyways - I did a search for 'crohns, cancer' so I will copy/paste some replies.

Lydia - As far as I know the other immunosuppressants like 6 MP and Imuran and methotrexate also have a cancer risk. There is a risk for cancer anytime you suppress your immune system. I choose to take my remicade but I also eat cancer fighting foods, like blueberries, dark leafy greens, and green tea. I used to smoke for my own selfish pleasure and that had a cancer risk. I figure taking remicade cant be as bad as smoking and it actually helps my disease.

Scopesearch - thing is, i cant decide between the two due to the side effects. my doctor informed me that 6MP + Remicade would possibly last longer (due to the fact that 6MP lowers your immune system in hopes that your body wont create antibodies against Remicade) than Remicade alone (which in this case, your body would create antibodies sooner.) thing is, 6MP + Remicade showed 32? cases of some sort of liver cancer within the past 3 years or so. my older brother says its too short of a time period to truely determine if its from 6MP + Remicade though.

*MBH - I thought the cancer risk with Remi was blood cancer, not liver though - so who knows about that ^

This whole thread -
http://www.crohnsforum.com/showthread.php?t=8112&highlight=remicade,+cancer

Crazycanuck - Edit: sorry those increased cancer risk levels arent really as bad as they seem to be. Well atleast to me. Peaches added in the remicade club section that your risk of lymphoma increases from 1/10000 to 3 or 4/10000. This mean a .04% chance shed develop it. The thing my doc is most worried about would be cold and flu because it suppresses the immune system.

Here's a pretty good one I think-
http://www.crohnsforum.com/showthread.php?t=5480&highlight=cancer

And the first 6 posts of this thread -
http://www.crohnsforum.com/showthread.php?t=2787&highlight=cancer


Hmm.. okay - I just got tired, but here is the search list if you want to do some more.
http://www.crohnsforum.com/search.php?searchid=452550

Hope that helps a little.
MBH

 

[Brian'sMom]

Yes, that helps! Thanks. It's be different if I was taking it, or if my son was old enough to understand the risks himself...he's just 10 and I feel like I need to make sure he's safe. Lately it seems like we've been in a viscious circle of him taking meds...then trying others...all the while he keeps getting sick...then that makes everything worse, etc etc etc... I feel like he was doing better when he wasn't diagnosed and on no medicine. (I know that's not the case because I can't feel the pain he's having in his gut...but he was a kid that was never sick and didn't even take tylenol. Sorry to sound so doom and gloom, i'm just feeling a pity party the past few days. We spent Christmas isolated from the world because he had his 2nd infusion on Tues the 28th, and he got sick anyways...can't seem to catch a break.

 

[Lydia]

If cancer is worrying you then try lots of cancer fighting foods. Have him drink a smoothie full of greens and dark berries each morning, if he can handle it. Maybe try upping his vitamin D. My 2 year old takes 1000 IU a day. Maybe try 2000 IU? Also a chewable vitamin C would be good for him as well during cold and flu season. Its an antioxidant which are good for preventing cancer and its good for the immune system. I also drink green tea. They have caffeine free green tea and that is also full of antioxidants.

Another thing to put it into perspective is that active crohns is also a cancer risk. Its a risk for bowel/intestinal/rectal cancer.

Also prednisone and azathioprine lower all aspects of the immune system where remicade only lowers one factor of it. So for colds and germs he is better equipped to fight them. It can take awhile for him to recover from the aza and pred so he may still be a bit suppressed, but after awhile he should be almost as strong as any other kid. I get over colds and bugs just as easily as my husband and daughter, so I am not anymore suppressed then they are IMO.

 

[Brian'sMom]

Lydia,
You make a bunch of good points!! He just went off the azathioprine on Dec 7th. Its most likely still in his system. We recently just started Vit D(in Dec also), his levels were low. He did respond well to his first dose of Remicade, he felt good for first time in a very long time. I just have seen in a few threads here where women are relieved that the cancer risk is more for adolescent boys ages 12-17! But they are leaving out the part that when Remicade is joined up with imuran or 6mp. My son has stopped taking the azathioprine.

 

[Lydia]

Probiotics are another important aspect of the immune system. If you keep his body populated with good bacteria, it makes it harder for bad bacteria to take over. Things like Kefir, yogurt, and homemade sauerkraut are all sources of good bacteria. I made a big batch of sauerkraut and we all have a bite or 2 with big meals. Its full of probiotics and digestive enzymes. Yogurt makers are also fun, and you can control the ingredients, as lots of the store bought stuff is full of color, and other chemicals.

Thats just me though, I really love the whole foods approach to diet.

 

[sick-of-crohns]

Remicade was the best thing that happened to me, I felt like a new person the next day; my doctor took me off after I had a hemicolectomy. After that I was fine. A few years after I did have a tumor in my uterus, I don't know if Remicade made it happen, but I would deal with a few more tumors now to be on Remicade again. Like I said before, the best thing it happened to me.

 

[Brian'sMom]

An update, my son did test positive for Strep Throat, but they started antibiotic Monday and so they just moved his infusion on Tues for later in the day. I thought they'd cancel his infusion for a week or so. He had no allergic reactions to the remicade. We're now waiting to see if it helps him...antibiotic is doing its thing on his intestines right now, but Lydia, I started him on probiotics. I put a thread in 'parents of kids with IBD' to see if there is a group of kids here also going the remicade route. Trying to cover my bases, but probably instead looking like a redundant wierdo! My GI doc says they are following 200 kids on Remicade and a total of 500 with IBD. You'd think they'd have a way for us parents of the 'supposed 200' to contact each other...I wish.

 

[Brian'sMom]

I found this article today on the CCFA website. It's easy to read and very interesting. It sums up the risks vs benefits for many drugs that are taken for crohn's. I feel better after talking to many on this forum, and after reading this. I wanted to share the link:
www.ccfa.org/webcasts/Risk and BenefitsTranscript.pdf

 

[Naddie4589]

Hi!
i just wanted to share that i might have to start using remicade soon enough, but my doctor reccomended strongly that i make sure that the Azathioprine in my system was all out which normally takes 3-5 months, because that is where the risk of cancer comes in.

 

[Mark's mom]

I wanted to thank Brian's mom for her posts and the link. My son is 18 years old and starting remicade tomorrow. I have been going through the same feelings and thoughts even though he is 8 years older and it feels like we are putting poison in him. He on the other hand is anxious to get started. It made me feel better to read the article you posted and see I am not alone in my fears. I am going to follow the advice left on this site also with the probiotics and cancer fighting food. it feels good to do something in that direction. I would like to know how Brian is doing now.

 

[MarciW]

My 12 year old son has been on Remicade for over a year. Remicade has given Trevor his life back. He has been symptom free since he began treatment. We struggled with the decision for a long time but his quality of life is so much better because of Remicade.

 

[Ms.Pickle]

Hi,
I really appreciate Brian's mom's thread. How is he doing? David is getting his next loading dose of Remicade on Tuesday. I still am concerned about Remicade: especially when people stop me on the street and tell me not to put my child on Remicade. I just wish there was a better way to go.

Brenda

 

[Pipergirl]

There is a small percentage of people who actually get the cancer we are warned about. I have had infusions since January, which i know isn't a long time. I have also been on 6mp while on remicade and i haven't had any complications, if anything it made an improvement. For me it was a risk i was willing to take and it has really done wonders. Remicade has made it seem like i didn't have anything wrong and i was back to normal. I was 16 when i started remicade, now 17, and it has allowed me to have my life back and function normally. It is a personal choice, but know there are many people that have been helped tremendously from it!