Feeling totally crushed at the moment. I’m currently on a reduced dosage of Xolair. I’ve had that horrible burning now for a few days, the scratching has begun and the hives are trying to break through. I realise the pics don’t look that bad but I’m hoping my itchy buddies totally get where I’m coming from. I want a big non itchy hole to hide in and cry. Before you know it, I’ll look like picture three. And still they want me to continue with the reduction.
Tania Hughes Why have you/they reduced it Sharon? Is it to make it last longer at 150mg x 12 instead of 300mg x 6?? Feel your itchy pain 😢x
Sharon Dewstowe I did the UK trials Tania. I don’t have the recommended breaks in treatments and am on a higher than licensed dose. I have been on Xolair constantly for over 5 years. Every year, it is suggested that my dose is reduced to see what happens. I told them this would happen (as it does every time). I emailed my team last night to let them know my symptoms were returning. They replied this morning saying they wanted to continue with the reduction and monitor me. I’m in pieces. I feel like I’ve turned the clock back. For the first time in ages, I’m unfortunately, willing my hives to return with vengeance to prove a point for when I’m due my appointment this Friday. It maddens me that the “experts” still don’t seem to realise the effect this horrible disease has. I’d love them to all spend a day in the life of a CSU sufferer. Maybe then, they’d stop screwing with our lives.
Tania Hughes Totally get it. I remember now you saying you did the trials. I have had 6 month courses since 2012 – so one of the first as well. I have begged, cried , shouted when it comes back every time to at least book me in – but no I end up in a state every time. Have now extended to 300mg every 6 weeks – but was offered the 150mg ( which I started on before it was licensed) to make it last. This was my arm after 8 weeks of no Xolair- but on 30mg prednisolone which I resort too!
Sharon Dewstowe Bless you Tania. They’ve reduced my dose by 150mg. My “normal” dose goes 300mg one week then 150mg two weeks later and alternates every two weeks. I wish I could go that long between doses. ☹️
Meghan Reynolds So sorry
Sharon Dewstowe VICTORY!!! NORMAL DOSE REINSTATED! 😃😃😃😃😃
Tania Hughes Yay!!!!! Thank goodness for that . I know that feeling and it’s bloody marvellous 😂!! So pleased for you
Sharon Dewstowe Thank you lovely. X