HUVS and Xolair (omalizumab)

[kleopetra]

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

[Suzym2u Moderator Vasculitis UK]

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.

[kleopetra in reply to Suzym2u]

Thank you Suzym2u,

I've found a few articles about HUVS but none mention Xolair as a the choice of treatment. My doctor have called the producing company and asked for any internal study, but there's nothing on HUVS. I guess I'm one of a kind

[PaulaC]

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.

[kleopetra in reply to PaulaC]

Hi Paula!

Xolair was used as a glucocorticoid-sparing therapy to minimize my Prednisolon dose. I wasn't cooping well at all with the steroides. I take them to keep the urticarial vasculitis, hives and angioedema down.

Now I take Metoject 20mg once a week which is supposed to control the HUVS.

After I took the Xolair-shots my hives and urticarias diseappered and I experienced an improvement in my breathing as well. My doctors says my obstructive lung disorders are due to years of smoking. Of course part of it is, but I stopped years ago and it hasn't improved since.

Since they have few markers to measure they I insecure what to do next. I still wait for the next step.

Petra