Infliximab

[LeahPrice]

Hello everyone... Basically I kept telling people I was in agony with stomach & back pains, ive got the pain constantly it can make me cry at times, its so awful. None of the doctors or my crohns nurses was listening to me until I went in for bloods & found out this flare up is quite severe, Liquid diet AND steroids havent touched it, so now I have to go in hospital to have Infliximab has anyone else been treated with this? I really dont know much about it and dont really have any other option at the moment. :/ xxx

 

[AlliRuns]

Hi Leah,there is a Remicade/Infliximab sub forum that contains lots of useful information. It seems scary at first, but it's really not so bad and many people after being on Remicade end up being symptom free. I just started so cannot attest to that yet.

Before I even got my first infusion, my GI talked to me about it, the consultant from BioAdvance talked to me about it and the pharmacist from the specialty pharmacy talked to me about it. By the time I got to the infusion clinic combined with all of the helpful info here, I felt like I had a pretty good handle on it.

Good Luck


Alli

 

[rygon]

Try these links
http://www.nacc.org.uk/downloads/factsheets/drugInfliximab.pdf

http://www.remicade.com/crohns-disease

The second has a great part about what you should be asking your doctor under the managing treatment link.

There also a sub-forum here for more info on the drug http://www.crohnsforum.com/forumdisplay.php?f=58

Many people (including me) are on this drug. There are a few that can be allergic to it (from rashes, to anaphylatic shock) so the nurses will keep a close eye on you at the start and put the infusion in slowly.

I have found it great and has given my life back. Im currently having it every 8wks (although hoping to change to 6 as its not lasting), but have had no side effects from t at all.

There is a very small increase in the chance to get cancer (although crohns also increases that chance as well)

When I 1st started having the infusion I did feeling a little bit dizzy and hot, but I put that down to having an infusion (1st time with iron was the same but felt much worse, I think it was down to a new experience, my body or mind wasnt adapted to it)

But apart from that I have nothing but praise for it, I feel so much better, although not perfect (I still have some symptoms now and again) it has allowed me to get on with my life and have fun

 

[LeahPrice]

thanks for both your replies, really helpful
I dont really have much of a life at the moment just ill 24/7 so hopefully having this treatment will change that!

 

[andreagillespieuk]

I know how you feel Leah, i've been in a flare for 6 weeks same pain in belly and back and had to fight with the drs to be taken seriously, after a colonoscopy they also found i had quite a severe flare. Tried steroids and they didn't touch it. I just went back onto inflixamab yesterday. It is my 2nd time on this medication as i tried it a few years ago, it worked really well for me but when i went into remission the funding was taken off me so i've had a fairly up and down time in the last year. I've been off work for a month and cant join my friends on nights out and its really getting to me now. Hopefully it will work for me a 2nd time round but i have been warned that when you have a break it doesnt work again due to building up antibodies so will have to wait and see.
I think inflixamab works well for a lot of people so give it a try...good luck
Andie x

 

[LeahPrice]

Thank-you for the reply, yeah this flare for me has been going on since October and this last month im literally house bound tried to keep going but im just too ill. Ive been told now I may need surgery as well as anfliximab its just never ending. I know exactly how you feel & really hope they get you sorted soon. feel better. xxx

 

[Jer]

Infliximab (Remicade) was fantastic treatment for me. Mentally, it was a pretty big step up, going from taking a few pills a day to going for infusions bi-monthly, but it was well worth it for me. I was able to live my life again, without being absolutely miserable day in and day out.