Infliximab Needed

Hi all,

This is my first post on here and I come to you in the hope that you can offer some advice. I have had 2 flare ups (Winter of 2009 and Summer of 2012) and am now about 1 month in to my latest one. In the past I have tried the usual medicinal options.

The first time as it was a new diagnosis I inevitably ended up in hospital on Mesalamine and Prednisone. I was going to the toilet 20-30 times a day and lost 2 or 3 stone. Just before the surgeons were called in they gave me Infliximab which saved me. The very day of the infusion I felt better and my stools returned to normal and I left hospital feeling better. I stuck on a low dose of Mesalamine but that was all I needed to stay in remission.

2.5 years later and I notice the mucus and blood are starting to return every so often. After 2 weeks travelling in Bulgaria I am back in the middle of a flare up. Since my first flare I have changed hospital as I moved to London. I speak to the doctors and tell them Infliximab was the only thing that worked last time. They say they cannot just give this to me as they have to go through a few stages. I agree to this in the hope that they will work this time. So I up the dose of Mesalamine and get started on the Steroids. Inevitably I end up in hospital in the same position as last time. I keep telling them about Infliximab and they say they cannot get funding and can only get it for Crohn's. They start me on Azathioprine for the long term effects and give me the full 4/5 day course of Cyclosporine. Again, none of this works. Having tried me on all the options they manage to secure Infliximab for me and I have the infusion. Days later I am back out of hospital and on the road to recovery. Upon release I ask my doctor if there is anything in place for next time and they say that they will be able to get access to the Infliximab a lot easier. A few months later I stop the Azathioprine as it is making me depressed and exhausted.

about 1 month ago I noticed a bit of Diarrhoea which I put down to something I ate. A week later things aren't getting any better so I call the IBD specialist. She is new to the hospital and did not see me last time. She ups my dosage of Mesalamine. I tell her it doesn't work and Infliximab is the only thing that has worked. I tell her that I will not take Steroids as they have always coincided with me getting worse. I also figure I would try the herbal remedies - VSL 3 probiotic, Aloe Vera juice, Boswellia, Pysllium Husk, Omega 3, Liquorice and Tumeric along with my usual Vitamins. Things seem to level off and I am stable (3-5 stools per day) but they are still mainly blood and mucus. With no change the IBD specialist puts me on Methotrexate. A week later and I am still not getting any better and toilet trips are getting a bit more frequent. I go and see the doctor this time and he says I need to try Steroids. I refuse Prednisone. I tell him that the only way I get better is Infliximab. I am informed that the only way to get this is if I am severely ill and hospitalised. He suggests I take Steroids as they will put more weight behind my argument for Infliximab. I end up receiving Budesonide. I have started these this morning and already I have been to the toilet 5-10 times today.

I am going to Spain in two weeks. It seems that none of the traditional medicines will help me and the only thing that does is the Infliximab which I cannot get unless I have Crohn's or get hospitalised. The bureaucracy of this is infuriating. It seems that there is nothing I can do to help. It is almost as if I am better off eating badly and drinking loads, getting hospitalised and then put in to hospital just to receive the infusion!

If I were to go private would I be able to get Infliximab? Does anyone have any advice? I am really at the end of my tether. I cannot afford the months of illness that I seem to have with every flare and there does seem to be no cure at the moment.

I would really like to hear some feedback. Sorry if this post is super long and boring.

Thanks
Dave

Hi there, thanks for the welcome. I have spent many months reading on here but this is my first post. So you had to be in the severely ill category to get the remicade treatment too. That does seem to fit with the information I am getting. I tried the enemas first time round and they just ruined me. I spent a month shooting liquid up my arse in the blind hope that it was just taking a while to work! My fear with going private is that I will receive the same barrier when trying to get Infliximab. I don't want to fork out all that money just to be told that I have to be stuck up in hospital to get treatment!

Thanks for the information about methotrexate. I am taking pill form at the moment. I don't know how long I will continue for. I don't like the idea of having another long term drug in my system. If it has anything like Azaithioprine's side effects I will not be staying on it!

I hope there is another way to get infliximab (or maybe the Buedsonide will work...) but I fear it will take something a bit more severe to get me better again. Which seems backwards.

I completely agree with you Gary. It is an extremely frustrating situation to know what helps but to not be ill enough to get it. I imagine that if I give it a few weeks then I will be hospitalised and receive the treatment. However it does seem rather odd to be waiting for that to happen. Such is life I guess...