Doctors or studies of HUVS in the United States

[Snugglybrighteyes]

Does anyone know of a doctor or research study in the United States? I have recently been diagnosed with HUVS and no one in my area knows anything about it and would really like a second opinion and to see if the medication and treatments that are being prescribed are the best options for me or if there is something better.

[Cvansidener]

I also have HUVs, and I live in Maui, Hawaii

[Hidden]

Hi,

Have you been in touch with the Vasculitis Foundation in the US? They have a list of Consultants with experience.

vasculitisfoundation.org

[Nap1 in reply to Hidden]

What is HUVS and what does it affect?

[Hidden in reply to Nap1]

It's a very rare variant of Urticarial Vasculitis, this link explains it a little.

ncbi.nlm.nih.gov/pmc/articl...

[Suzym2u Moderator Vasculitis UK]

This link from the website explains too. This page is also to be updated this month. vasculitis.org.uk/about-vas...

[AnnieWilson]

Hi, I also have HUVS and live in Kent, England

[Rofa]

I believe that the key to diagnosis is a biopsy. There is no single treatment for the condition unfortunately. I have had the condition for 10 years and am currently being treated with prednisone (10mg daily), methotrexate (25mg once per week), immunoglobulin (every 6 weeks) and Ruconest (twice per week). The combination has been adjusted and changed over the years but the progression of the disease is so variable that it is hard to know what is really needed and what is not. My attacks have generally reduced in severity and frequency over the years - but we don't know if this is the medication or just some sort of natural disease progression. I have in the past tried to reduce the prednisone dose, but this inevitably led to an attack. My attacks now happen very roughly every 8 months and the last three I have self medicated at home by taking a large dose of prednisone (intramuscular injection and then appropriate tapering) as soon as I notice symptoms - that seems to be the key and the attack has subsided within 48 hours. I'm not suggesting you do this without approval from your doctor though! I have a good relationship with my consultant and live very close to the teaching hospital where I am normally treated - which minimises the risks.