Learning to live with vasculitis

Browsing Category: Vasculitis Video

Browsing Category: Vasculitis Video

Managing vasculitis: A patient’s perspective
30 Jan

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

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

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

Living with #raredisease EGPA: Eosinophilic Granulomatosis with Polyangiitis
28 Jan

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

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

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

How do the IL-5 inhibitors Cinqair, Fasenra, and Nucala work?
26 Jan

How do the IL-5 inhibitors Cinqair, Fasenra, and Nucala work?

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

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

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

The GiACTA trial: Tocilizumab in Giant Cell Arteritis
24 Jan

The GiACTA trial: Tocilizumab in Giant Cell Arteritis

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

Managing vasculitis: A patient’s perspective
30 Jan

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

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

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

Living with #raredisease EGPA: Eosinophilic Granulomatosis with Polyangiitis
28 Jan

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

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

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

How do the IL-5 inhibitors Cinqair, Fasenra, and Nucala work?
26 Jan

How do the IL-5 inhibitors Cinqair, Fasenra, and Nucala work?

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

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

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

The GiACTA trial: Tocilizumab in Giant Cell Arteritis
24 Jan

The GiACTA trial: Tocilizumab in Giant Cell Arteritis

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

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vas-cu-li-ti-des. Noun. Plural of: vasculitis.
Definition: inflammation of the blood vessels;
Also known as angiitis or arteritis.

vas-cu-li-ti-des. Noun. Plural of: vasculitis.
Definition: inflammation of the blood vessels;
Also known as angiitis or arteritis.

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Vasculitides is a trusted resource for comprehensive information on vasculitis, managed by a patient, advocate, and researcher.

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About

Vasculitides is a trusted resource for comprehensive information on vasculitis, managed by a patient, advocate, and researcher.

Quick Links

Contact

Email: hello@vasculitides.com

Social

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