Infliximab for Crohns Disease?

[MrsPinotGrigio]

I was diagnosed with Crohns nearly 3 years ago & it's been under control with Mercaptopurine since then. I had a small flare up in July & was on steroids for 8 weeks. My consultant felt the Mercaptopurine had stopped working & mentioned Infliximab as an alternative. I've got an appointment with him next week & I've got a feeling he's going to recommend I change medication - I'm not unwell but I'm not 'right'. Has anyone any experience of this medication & if so did it help? I'm nervous as it means I may have to give myself injections.

You probably need to try on crohns forum or the crohns part of the healingwell website for responses. It has a different name in the US (remicade I think) so refer to it by both names.

I have a friend who has done great on it with no obvious side effects.

Ps. It's an infusion not injection so is done at hospital not by you at home. Hope your local hospital isn't too far away!

I agree that you should try joining a forum, they offer invaluable advice and support.

I have had UC for26 years and there is a great group on facebook (crohns and colitis) that I have learnt so much about this horrible disease.

Get well soon! Xx

I don't know if this is helpful or not but I've been on Infliximab for rheumatoid arthritis for 3 years. I've had no side effects from it at all and it's made a huge difference to how I feel.

My brother is on this for an IBD that has features of both Crohns and UC, he was really worried about starting it as it has some very rare but serious possible side effects but he has been on it a couple of years now and it very pleased as it has made a huge improvement to his symptoms.

Thanks for the replies - I'll have a look at those forums. I did try a couple when I was first diagnosed but found they all seemed to be quite depressing & full of 'competitive illness' which was the last thing I needed at the time. I did get some great support on here though which helped a lot.

nothruroad do you have infusions & how often? How long does it take? I'm worried about this as well as I work full time & only started this job in May & although they are fantastic & very understanding I'm conscious of taking a lot of time off.

funnyface31 can you send me a link to the FB group please? I am a member of a group which my sisters friend runs but thats for anyone who's got a stoma & I haven't had surgery yet.

I know what you mean the people who are regulars on the specialist forums are usually those with the most intractable disease.The ones the drugs work for are off living :-) I have family members stable and happy long term on infliximab for crohns with no serious side effects and Humira (different drug same type) has made a serious difference to my inflammatory arthritis. I'd say grab it with both hands if offered.These drugs can be life changing.

There are some stats based on reports from people who have used it on Patients Like Me if they help.

Brilliant drug, been on it nearly ayear. Have had Crohns 20 years and been through usual cocktail of drugs and been fairlystable on Azathioprine for years but having other issues.

Infliximab has been outstanding for me. You have 'loading' doses close together to start with, via 2hr infusion, then every 8 weeks over about 1hr is normal. Some people need them a week or two sooner.

MrsP sorry I've only just noticed this.

I cannot link the fb page but if you search for colitis and crohns disease you should find it.