HUVS and Xolair (omalizumab)

Hi there you all

I'm a swedish woman with a HUVS-diagnos. After trying out antihistamines, plaquenil, corticosteroides, dapsone, azatioprine, methotrexate, hydroxychloroquine my doctors gave me Xolair (omalizumab). After six shots a felt better then ever. Now they won't give me any more. The reason given is little research and scientific evidence.

Of course, with such rare disease and new therapy. Can anyone help me with some information, personal experience, articles, research. Anyhing at all would be a big help.

With love from Sweden & Petra

2 Replies

  • HUVS is extremely rare so not been well described and there is little research as numbers of cases are so few. I am not sure there are any clinical trials at the moment but will investigate.

  • Hi Petra, I also have HUVS - is the Xolair being used to control the HUVS or in relation to lung issues? My rheumatologist had suggested Xolair to relieve breathlessness but was over- ridden by my respiratory specialist stating it was not the appropriate treatment for me (obliterative bronchiolitis). I posted on the VAS UK Facebook page at the time for info and got the impression it was used with Vasculitis patients but with lung / asthma issues. I am on mycophenolate to control the HUVS - hope this helps.