Hi, Just found this site and think it will be useful for me to chat to others about Crohns..never really felt up to it before.

I have had severe Crohns for just over 2yrs now and the longest I have ever been in remission is 3mths, been on and off steroids every few months which I hate as they make me a hyperactive, hallucinating, anxious 'rabbit in headlights' with a face as big as the moon LOL. I couldn't tolerate the azathioprine & methatrexate so recently I was told they were putting me on infliximab. I went for a consultation today and was now told I'm going to be going onto Humira as it has less side effects and I can inject it at home...which sounds better!

I hopefully start in a few  (if they can get the go ahead otherwise it will be infliximab first) can anyone let me know how they are getting on with the Humira and how you feel on it. Or if you have any other info for dealing with this bitch of a disease...my main factor is stress rather than diet I think, as I have a worrying nature (always have done)

I just started taking my steroids yesterday so am a little bit loopy at the mo so forgive me if I ramble on a little  X

    

I'm the same as you with stress and with not talking, I just blocked it at first but after going to the hospital and sitting next to people having infliximab infusions it was really nice chatting to them.
I  have been on infliximab and was feeling great but been told that I can not have it as a maintenance drug I have to wait till I get ill really ill again before they will let me have it. Money!
Is not as if we have to put up with enough is it. I have spoken to people on humira and they seem to get on with it alright. Guess it beats spending all day waiting around for infusion!
I

How long has it been since you stopped the infliximab?   If it has been a little while, more than likely your body has built up antibodies to the drug and you would have a severe reaction to it.  That's what happens to many people. (including myself).  Humira works the same way as the other drug, the main difference is the infliximab is made with a mouse protein and the Humira is made with a human protein base, subsequently less likely to build up a rejection to it.   I took the Humira (pens) for a brief time prior to my last surgery, and the self injectable pen is very handy.    Of course, like all meds, there are side effect warnings for children using these type drugs.  

humira is the best drug going! i've been on it for a good few months now and its amazing, my tiredness has almost gone completely, i dont visit the loo very often and im a totally different person.. its that good my consultant has taken me off all my tablets and left me with humira and i have really severe crohns disease.
although im having alot of pain injecting the drug (which i'm dealing with my consultant at the moment now)
i would really recommend it!!

anything is worth a try!

Kim

Hi Everyone,
I am also new to the forum and am so pleased to have found you all!   I was diagnosed with Crohn's and UC nearly four years ago after being ill for the past 10. Have tried very anti-inflammatory drug going and reacted to them all, and have been on steroids constantly since diagnosis, having gained 7stones in that time, not to mention side effects!!!!!  Had my 9th colonscopy and biopsies done just before Christmas and am now waiting to start Infliximab this month. I am a 51yr old female, who lives some distance away from my hospital and  I am very anxious and nervous about taking this drug given previous experiences. Humira is not an option as my health authority will not pay for it . My consultant has told my my only other option is to have my colon removed and a permanent bag fitted. I would really appreciated any advice or information about your experiences with the drug and or surgery. Like Holly and I am sure many other sufferers I am so fed up feeling ill and knackered all the time.  Happy New Year to you all...here's to a healthier 2010!

Maggie. Argyll.

Hey all
Sounds like we are all in the same boat here.  Iv got severe crohns and tried every drug going, Methotraxate,inflixamb,thulidomide and am now getting the Humira injections. I have been taking them since the start of Nov and they have done nothing for me!! Made it worse truth be told, but everyone is different. I know people on it and they have been great since the first injections. Much to my annoance!!! Anyway the next step is going to be another op or been sent doen to Nottingham for the stem cell trial. Don't know yet whats happening but iv been off work since March last year and the 2 hospitals i go to can't seem to control it. Nightmare!!

Neilfisk

hey people, im like neilfisk. ive had every drug going including humira and were all to no avail, the only drug i did get a reaction from was the infliximab and that was in the form of knackering my liver. im currently left with and very much torn between my final two options which are surgery , being left with a perminate illeostomy, or like neilfisk the possibility of the stem cell theropy in notts. ooooh why is life so hard ? anyway i hope holly has a much more positive responce to the humira. stay well every one

Hi all, I'm new too - 23 years old and had crohns for around 12 years now. I started well on meds and found Infliximab to be a wonder-drug...put me into remission right through my A-levels and most of uni. Unfortunately I then developed a skin rash so had to give it up When I had my next severe flare-up we tried humira which was also great (and no reaction this time) but the disease had progressed to the point where I was forced to opt for surgery anyway and now have a temp ileost.

Anyway, as far as the -mab drugs go I would definately give them a go, although everyone is different. I also found that stress was a factor in my crohn's, just being nervous made me think I needed to go even if I didn't. Once I recognised this I would pre-empt stressful situations and take some immodium beforehand or just sit calmy until the feeling passed, which it often did for me.

As far as surgery is concerned, I had a resection (2.4m) to get rid of the severely diseased part and it has helped a lot. I can now begin over with the drugs again to control what is left. Even the ileost isn't getting to me TOO much (only had it a month!) I can still wear whatever I want (except bikinis...) and it isn't obvious to anyone. Good luck guys, keep smiling.