My story

[Nlouise17]

Hello all, I found this site this morning when looking for people's opinions on infliximab. I was diagnosed in 1993 when I was 15 and had a bowel resection operation in 1994. The operation ended up being very successful and I had five years in remission before I had my first flare up - unfortunately a bad flare up! My crohn's came back in exactly the same place but the scar tissue ruptured and I ended up having an internal bleed resulting in emergency blood transfusion. Since then I've had a number of flare ups over the years and my crohn's has spread and I now have it in various areas of both large and small bowel. Two years ago I was also diagnosed with vulval crohn's, which is apparently quite rare and I've found out really hard to control, a nightmare being in such an intimate area!!
Treatment wise, I've been on predisolone and budesonside a number of times. I've also tried pentasa, methotrexate and azathioprine but reacted badly to these.
My latest flare up I was put on a high dose of predisolone to give it a kick and have now just started infliximab with my second dose yesterday. Reading people's posts most people seem to be getting on great with infliximab so I'm hoping the side effects I think are related go soon - the crohn's symptoms have definately improved but I have constant headaches, I've also experienced shakes sometimes and redness and flushing in the face resulting in feeling very hot at times!
If anyone has any comments they'd be gratefully received!
Anyway good luck to everyone in dealing with their crohns! :goodluck:

PS: I think this site is a great idea and can't believe I haven't found it before, I'm always looking for new ways to try and help my condition!

 

[muppet]

Remicade can be a godsend but you really have to be on top of symptoms while you're on it. Even things that seem unrelated to Crohn's should be journaled and reported to your specialist.

If I may as, what trouble did you have with Azathioprine?

Good luck to you! Hopefully Remicade will give you the relief you're looking for. I don't think I'd ever even heard of vulval Crohn's before this post. Ugh, you poor thing!

 

[Angrybird]

Hello and welcome to the forum

When you have had the infusions were you given anything beforehand to avoid a reaction? Have you been able to let your GI doc/nurse know about this? You may have already found it but if not we do have a sub forum for the Remi that is worth checking out to see if others have had the same experience with this: http://www.crohnsforum.com/forumdisplay.php?f=58.

AB
xx

 

[Nlouise17]

Thank you both for your replies.

Muppet: My side effects on the azathioprine was funnily enough headaches! I also had a lot of nausea which was almost constant so in the end I just had to come off of it. Thanks for the advice, I'm due to see my consultant on Tuesday so will be discussing it with her then, although hoping they will have got alot better by then too!

Angrybird: No, I haven't received anything before either infusion to stop any reactions, so I will ask about this next time. And many thanks for the heads up on the other forum I wasn't aware so will have a look.

Thanks both x

 

[sid]

welcome to the forum Nlouise17. Glad that you have found the site. Also spread the word if you know any other crohn;s patient. Wish you good health.