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 […]
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
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
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.
The IL-5 inhibitors Cinqair (reslizumab), Fasenra (benralizumab), and Nucala (mepolizumab) block IL-5 and help control eosinophils. How do they work and what are the differences between them? Why target IL-5? IL-5 is a cytokine, a small signaling molecule. IL-5 is produced and secreted by T cells and mast cells. The IL-5 molecules can then signal to
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
Stone et al. Trial of Tocilizumab in Giant-Cell Arteritis. N. Engl. J. Med. 2017 377(4):317-328. NEJM Quick Take: Click on the following link from the New England Journal of Medicine to view a 2 minute video summarizing the study results: video. Game changer: Why is this study important? Tocilizumab is the first treatment, other than corticosteroids, shown