vasculitides

living with vasculitis

anca/aav

Vasculitis Webinar

Managing vasculitis: A patient’s perspective

In March 2017, I recorded this webinar for the Vasculitis Foundation’s Road Map to Wellness webinar series.  In the webinar, I talk about my diagnosis with EGPA/Churg-Strauss vasculitis and the first few years of my treatment course. I also talk about some of my approaches for tracking symptoms, working with doctors, and strategies for managing […]

Managing vasculitis: A patient’s perspective Read More »

EGPA diagnosis

Step one: My Diagnosis with EGPA/Churg-Strauss Vasculitis

Below is a summary of the events leading to my diagnosis with EGPA/Churg-Strauss Syndrome, a rare form of vasculitis, in 2014.  Looking back, I can see worsening symptoms developing for about a year prior to my diagnosis.  Getting a definitive diagnosis can be a long and difficult road for many vasculitis patients.  I know how

Step one: My Diagnosis with EGPA/Churg-Strauss Vasculitis Read More »

vasculitis_video_thumb

Living with #raredisease EGPA: Eosinophilic Granulomatosis with Polyangiitis

Disclosure:   I received a small sum from GSK for shooting this video, which I donated to charity.  For more details and a full list of disclosures, please see the Disclaimer page. This 2 min video was recorded at GSK’s offices at the Navy Yard in Philadelphia last month as part of their educational efforts about

Living with #raredisease EGPA: Eosinophilic Granulomatosis with Polyangiitis Read More »

tapers-treatments-flares-featured-image

Tapers, treatments, and flares: My treatment course for EGPA/Churg-Strauss Vasculitis (Oct 2014 – Apr 2018)

NOTE:  This is not a typical treatment course for patients with EGPA/Churg-Strauss (not that there is such a thing as a “typical” EGPA patient!).  It has taken several years and much trial and error to find a combination of medications to try and keep my immune system under control and it’s a work in progress. 

Tapers, treatments, and flares: My treatment course for EGPA/Churg-Strauss Vasculitis (Oct 2014 – Apr 2018) Read More »

The MIRRA trial: Mepolizumab (Nucala) or placebo for the treatment of EGPA/Churg-Strauss Syndrome

Wechsler et al. Mepolizumab or Placebo for Eosinophilic Granulomatosis with Polyangiitis. N. Engl. J. Med. 2017 376(20):1921-1932. Disclosure:  I was a patient in this clinical trial from March 2015 to May 2016 and I am still taking mepolizumab to treat my EGPA. For more details and a full list of my disclosures, please see the

The MIRRA trial: Mepolizumab (Nucala) or placebo for the treatment of EGPA/Churg-Strauss Syndrome Read More »

Scroll to Top