Full of high hopes for my new treatment, I went along to the infusion unit at the Western General in Edinburgh to have my first dose of rituximab. Over the last couple of years I've had bad reactions to methotrexate and sulfasalazine, no response to Cimzia or Humira and consequently RA has been progressing unchecked.
The unit is only a year old, the chairs were very comfy and the staff were great so it was a good start. When a doctor finally found a useful vein the cannula went in and I was plugged into antihistamine, then hydrocortisone and finally the rituximab.
I snoozed through the first hour (thanks to piriton), then soup and sandwiches arrived for lunch. After which I realised something was wrong - my soft palate felt large and uncomfortable and my nose was blocked. So I let the nurses know I thought there was something odd..... before I knew it 3 doctors were around me, the infusion was stopped and 'it's a serious reaction' was declared. No more rituximab for me, ever.
I was given more antihistamine, seemed ok and was sent home after a few hours of observation. Once home the effects have come and gone in waves, including massive thirst, tingling tongue and lips, hot flushes, swollen face, hands and feet so I had to see my GP urgently for more antihistamines and steroids.
So my long-hoped for journey with rituximab came to a rapid, unexpected end. Emotionally I feel disappointed, but physically I feel great because I'm full of steroids, I'm not sure how long that will last. I see my consultant next week to discuss what next, at the moment I've no idea what options are available to me but the journey towards a useful treatment continues...