Infliximab

infliximab

Hi I am new to this forum, I have had Crohns since I was 17 and I am now 35, I have been on all sorts of different medicines since then and I have had about 20 feet of my intestines removed over the years, I have had an ileostomy for a year now and am getting it revearsed when my Crohns settles down again, I have just started on the drug 6mp and will be started on infliximab in a couple of months, I am really worried about taking this drug because of the cancer link, I have two daughters aged 9 and 12 and dont want to put them through anything else please can I have yr thoughts or experience with this drug thanks

:welcome: Christie! Wow that is alot of intestine out, I have had a total of 2ft and thought that was alot. I was on 6mp but affected my liver within a week. Some do great on it. Inflixamab I believe is Remicade and I had a reaction to it, pretty severe, but I did do not too bad on Humira for 6 months and then I was down to a weekly shots and wasnt working. Remicade is mouse protein and could be for you, Humira is Human protein and is to me far more mild. Cimzia is relatively a new drug, but it isn't in Canada yet, it is my last hope as I have been on every drug known to man, my body just rejects everything. Now I just switch about and trial and error.

I know you are worried of cancer risks but some people get cancer with or without it , they HAVE to report it and it is very rare. I have been on the forum 3 years next month on and off, and so far NO one has had cancer from it, that I know of. You have young children and need to be there for them and Remi seems to help so many. Check out some of the remicade clubs, it could make your decisions easier. Hope you come on and join us, glad you are here!

Thanks for the reply Pen, I have spoke to a few people who have been on it and say it is amazing and that the symptoms go I think I am just sick of taking drugs and want a drug free life but suppose thats not going to happen! Have you tried methotrexate, I know people that that has helped although it didnt work for me

Yep, sure did, I tried methotrexate two separate occassions, all I did was get headaches and nausea, and wasnt working at all, at the 15th shot they screwed up my dosage and my blood work so I said "I'm outta here" told my gp and that was it, have no other options. I know you want to be med free, we all do, some do get remission and some dont, been flaring since my last surgery 2003.. avoiding that like the plague. Have you tried anytime without meds or natural stuff?

I'm on remicade and it has been working great!! I was and still am a little scared of the side effects, but I look at it like, would I rather live a great, almost normal life now and have a chance Ill pay later or live forever feeling like crap! Simple decision to me! Especially if I had young kids like yourself, they will only be young once, I would want to make sure I can play with them and not be layed up in pain.
Just my opinion though. Either way I hope you start to feel better!

Also, Active crohn's also carries a cancer risk. The cancer risk from remicade is really low. I used to smoke for nothing more than my own satisfaction so I decided to take remicade if it could help me feel better. It put me in remission and closed my fistulas in 4 days.

As for cancer risk there are plenty of foods, and herbs that reduce cancer risk too. I eat these things to help reduce my risk.

I have a daughter that will be 3 in about a week, and she was so happy to have her normal mommy back. My husband is happy to see me feeling better too.

Thanks guys, I have spend the last few years on no meds Pat, but it is time now to try something else, had an ileostomy last Feb and was booked in for the revearsal last month but was advised not to with me having active crohns, but have decided am def gonna start on the infliximab and yes there are side effects with everything and my children will want a mum that is not in pain, just hope it works!!

Good Luck Christie!

You're very lucky, some hospitals won't even entertain the idea of Infliximab, it's a postcode lottery out there!
If they say you can have it, then snatch their hands off!
xxx