Hi. I've had crohns disease for 10 years, until last year I was managed really well on Infliximab, and despite the odd flare I generally managed well.
In Oct 20 I became really unwell with recurrent viral illness and crohns flares. I found out in Feb 21 that I had developed antibodies to inflixmab and it wasn't working anymore.I was severely vit d and iron deficient. In April 21 I started adlibimab (humeria) and vit d, iron and B12.
I have continued to go downhill, I had to reduce my hours at work from full time to part time, and I could barely manage that. I have recurrent viral infections, my hair is falling out, my joints are in agony, I'm covered in spots and my mouth is so sore. I have widespread pain (not constant, it just appears and then goes again). I have a recurrent cyst in my groin that keeps bursting and reforming. My last calprotectin was 650 but my crohns symptoms are generally OK and I have no increased bowel pains or change to usual habits , it's everything else that I'm struggling with. It's like my body is just slowly crumbling.
My gp has signed me off on the sick for 2 months and prescribed antidepressants. My gp wrote to my consultant who has requested an mri but is unable to review me until January. I haven't physically been seen by any health professional since April 21, and that was the nurse who taught me how to self inject.
I keep calling my IBD nurse team but they say they can't offer much help as my pain is general and not ibd, and sign post me back to gp. Their advice is to await my next telephone consultant review in January 22.
Im at a loss what to do, I'm supposed to go back to work in 3 weeks and nothing has improved. I'm thinking about just quitting my job as I know I can't do it like this.