Hiya, My name is Michelle and I live in Hertfordshire, England. I am a 42 year old single mum to a wonderful 12 year old )
Lost My Funding:
Over the years I have tried just about every type of medication and have like many others, lived on a diet of steroids and anti inflammatory pills with no help to my UC at all.
A little over two years ago, my consultant decided the time had come to ‘throw some money at me’ (his words) as I was about as low as I could get mentally and physically. He sent me for my first Infliximab infusion and I haven’t looked back since! Its been fabulous for treating the UC with the exception of the fatigue I suffer from which is a constant. At roughly £1600 a time, it is expensive, but it means I can work without problem and I can take my son to all the places he needs to go (playing in three football teams!) without worrying about not having access to a toilet.
Sadly my infliximab ‘maintenance’ funding was cancelled after my last dose in November 2011 and I am now becoming symptomatic again. This is par for the course as I have a stressful job and as a single parent, I am the sole provider for my 12 year old son. I can’t risk the time off work as I had 8 weeks off before christmas following a total hysterectomy (recommended by my Consultant and GP to aid the fatigue) and a double bladder repair (following a mistake by the surgeon during the hysterectomy) and the stress of becoming too sick to work only makes the UC worse. I don’t know what to do now to be honest. I know things are not that bad really, I mean its not like I have cancer or anything, But after two mainly problem free years, the thought of going back to that bloody mess (excuse the pun) and thirty trips to the toilet every day are just a little too much to bear (
Sulfasalazine – dreadful joint pain and swelling.
Mesalazine – headaches
Asacol – Headaches
Prednisolone – tablets and foam – weight gain and no long term help
Azathioprine – long term use with Infliximab (remicade) , B12 injections seems to have helped me immensely
written by Michelle
submitted in the Colitis Venting Area