CSS / EPGA Good Reads and Views

Here is my recommended reading list for CSS /  EPGA patients.   Many of these books are not CSS specific but relate to vasculitis, autoimmune illness, or chronic illness.

readingpathway

Pathway to Knowledge

(This is a ‘living’ page so check back often for new additions.  I will post on my blog when major additions are made)

***My #1 Recommended Read ***

****The Spoon Theory written by Christine Miserandino***

The best description of how one lives with the limited energy of chronic illness

 VIDEOS

VF Extraordinary CSS / EGPA Stories.  This collection of extraordinary stories showcase patients diagnosed with Eosinophilic Granulomatosis with Polyangiitis (Churg-Strauss Syndrome).  These videos were produced for the Vasculitis Foundation by Ed and Mary Becker.

NewsLetters

logo1-300x60Archives of the Vasculitis Foundation’s Newsletters

The Vasculitis Foundation publishes a bimonthly newsletter for the vasculitis community. The newsletter features the most current information and advances being made in the diagnosis, treatment and remission of vasculitis.  Each issue includes profiles of patients, family members, researchers and vasculitis centers and also highlights awareness and fundraising efforts and VF activities.  The newsletter is available to members. Click here to join the Vasculitis Foundation.

Books, Booklets, Hand Books and Pamphlets

Vasculitis Foundation’s  Patient Information Book — PDF 85 pages  (FREE)

For the Following books I give the Amazon.com links.  Please shop around if you plan on purchasing, I am not affiliated with Amazon.  It just is the site I use for most of my book purchases.

Inflammatory Diseases of Blood Vessels Hardcover – July 2, 2012

Reaching Beyond The Clouds: From Undiagnosed To Climbing Mt. Everest Paperback – August 2, 2011

Coping with Prednisone, Revised and Updated: (*and Other Cortisone-Related Medicines) Paperback – December 10, 2007

Oxford Textbook of Vasculitis (Oxford Textbooks in Rheumatology) Hardcover – April 20, 2014

Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness (New Edition)  Nov 19, 2012

Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties Paperback – June 24, 2008

A Delicate Balance: Living Successfully With Chronic Illness Paperback – July 1, 2000

Patient: The True Story of a Rare Illness Hardcover – April 1, 1997

You Don’t Look Sick!, Second Edition: Living Well With Chronic Invisible Illness Paperback – December 17, 2012

After the Diagnosis: Transcending Chronic Illness Hardcover – August 17, 2010

Chronic Inspiration: Heartfelt Perspectives on Life with Chronic Illness Jun 2, 2014

Good Days, Bad Days: The Self and Chronic Illness in Time Paperback – September 1, 1993

Online Articles and CME units

Note: with any article you should be aware of the publication dates.   New advances in diagnosis and treatment may have changed since the publication of the article, web page, or case report.
  1. Psychological Aspects of Vasculitis — Editorial, Rheumatology 2000 — PDF file
  2. Boon and bane of remission induction with rituximab in ANCA-associated vasculitis: lessons learned from the RAVE-ITN follow-up study — 2014 — PDF file
  3. EGPA: early diagnosis is better by Christian Pagnoux, MD –June 2013 — PDF format
  4. Eosinophilic Granulomatosis with Polyangiitis by Carmen E. Gota, MD (CME online from Cleveland Clinic)
  5.  New Directions in Small Vessel Vasculitis – ANCA, Target Organs, Treatment, and Beyond  — Webcast and Journal Supplement Series — Cleveland Clinic CME series
  6. Uncommon Vasculitides: Vasculitis Mimics by Atul Khasnis, MD — Cleveland Clinic CME
  7. Vasculitis Disease Activity Scoring
  8. Vasculitis Damage and Activity Indices
  9. 2012 Revised International Chapel Hill Consensus Conference Nomenclature of Vasculitides – PDF   (HTML version here)
  10. Oxford Textbook of Vasculitis
  11. Just in Time Medicine — Michigan State University — CSS/EPGA
  12. Churg-Strauss Syndrome: Evolving Concepts

  13. Rituximab in the treatment of refractory or relapsing eosinophilic granulomatosis with polyangiitis PDF – 2013

  14. Eosinophilic granulomatosis with polyangiitis — Epocrates (really good medical site) 2014

  15. Eosinophilic granulomatosis with polyangiitis (Churg-Strauss): Clinical characteristics and long-term followup of the 383 patients enrolled in the French Vasculitis Study Group cohort –December 2012

  16. Biomolecular markers in assessment and treatment of asthma — April 2014

  17. Eosinophils in vasculitis: characteristics and roles in pathogenesis by Paneez Khoury, Peter C. Grayson & Amy D. Klion — 2014

  18. Key advances in the clinical approach to ANCA-associated vasculitis by Cees G. M. Kallenberg 2014
  19. Vasculitis: determinants of disease patterns by Gary S. Hoffman & Leonard H. Calabrese 2014

  20. Why is effective treatment of asthma so difficult? An integrated systems biology hypothesis of asthma — June 2009

  21. Vasculitis and the dental team — June 2013

  22. Pathogenesis of antineutrophil cytoplasmic autoantibody-mediated disease by J. Charles Jennette & Ronald J. Falk – July 2014
  23. Key advances in the clinical approach to ANCA-associated vasculitis by  Cees G. M. Kallenberg 2014

  24. Successful outcome of pregnancy in patients with anti-neutrophil cytoplasm antibody–associated small vessel vasculitis – 2014

  25. Serum biomarkers are similar in Churg–Strauss syndrome and hypereosinophilic syndrome — July 2012

  26. Cardiac involvement in Churg-Strauss syndrome — Feb 2010

  27. Eosinophilic pneumonias — 2005 (an older article but an interesting read….)

  28. Eosinophilic granulomatosis with polyangiitis (Churg–Strauss): State of the art — January 2013

  29. How do we Diagnose Vasculitis?(nomenclature/classification, clinical,laboratory, imaging, biopsy)  David G I Scott Norfolk and Norwich University Hospital — PDF – Slide presentation – 2012

    30. Ear, nose, and throat involvement in eosinophilic granulomatosis with polyangiitis by  Corisande Baldwin1, Nikolaus Ernst Wolter2 and Christian Pagnoux1*    April 2015

    CSS / EPGA Case Studies

Churg-strauss syndrome presenting with salivary gland enlargement and respiratory distress — Feb 2006
Churg-Strauss Syndrome Presenting with Cardiac Mass and Right Ventricular Obstruction — Dec 2009 (PDF)
Combined central retinal artery and vein occlusion in Churg–Strauss syndrome: case report — June 2006
Churg–Strauss syndrome presenting with eosinophilic prostatitis — June 2006

More Articles and Sites (updated 1/23/2016)

Although there are many abstracts (summaries) of articles on CSS/EGPA, I try to only post full text article links here which are free.

Nucala®(mepolizumab) injection for subcutaneous use Prior Approval Criteria.  Here’s a little something I found that talks about what you need to qualify for Nucala — according to Medical Mutual (an insurance company in Ohio)   and Here is one from Anthem Blue Cross / Blue Shield.

One more on Nucala / Mepolizumab – Institute for Clinical and Economic Review, 2015 Mepolizumab (Nucala®, GlaxoSmithKline plc.) for the Treatment of Severe Asthma with Eosinophilia: Effectiveness, Value, and Value Based Price Benchmarks.   Draft Report December 21, 2015

Rituximab in the treatment of refractory or relapsing eosinophilic granulomatosis with polyangiitis (Churg-Strauss syndrome)   Full article / German Study / 2013

Rituxan May Be New Treatment Option in EGPA
High rates of improvement and reduced need for prednisolone in eosinophilic granulomatosis with polyangiitis.  2014

Ear, nose, and throat involvement in eosinophilic granulomatosis with polyangiitis. Corisande Baldwin1, Nikolaus Ernst Wolter2 and Christian Pagnoux1*

Serum Biomarkers in Patients with Relapsing Eosinophilic Granulomatosis with Polyangiitis (Churg-Strauss)    Published: March 26, 2015

Coronary Arteritis and Eosinophilic Granulomatosis with Polyangiitis (Churg-Strauss Syndrome) Case from: Robert Huggett, Christina Kamperou, William Moody.   Institute: Department of Cardiology,  Russell’s Hall Hospital,  The Dudley Group of Hospitals, UK.

Noncorticosteroid Immunosuppression Limits Myocardial Damage and Contractile Dysfunction in Eosinophilic Granulomatosis With Polyangiitis (Churg-Strauss Syndrome). January 2015

A Case of Churg-Strauss Syndrome Presenting with Foot Drop by Juneth Ria R. Limgenco-Hipe, M.D.; Bernadette Heizel Manapat-Reyes, M.D. (PDF file)

Churg-Strauss Syndrome or Eosinophilic Granulomatosis with Polyangiitis by Adriana Izquierdo-Domínguez , Arturo Cordero Castillo , Isam Alobid and Joaquim Mullol .

(This is a link to a PDF file that will be downloaded to your computer or viewed using a preview viewer.)

Eosinophilic granulomatosis with polyangiitis (Churg Strauss) (EGPA) Consensus Task Force recommendations for evaluation and management.  European Journal of Internal Medicine 26 (2015)

Churg-Strauss Syndrome Presenting as Refractory Asthma.   Authors: Michael Langan, MD, Andrew Schreiner, MD, and Essa Essa, MBBS.   November 2014

Eosinophilic granulomatosis with polyangiitis (formerly Churg–Strauss syndrome): where are we now? by  Matthieu Groh, Christian Pagnoux, Loïc Guillevin.   Published 1 November 2015

Churg-Strauss Syndrome Mimicking Parasitic Infestation: Atypical Presentation of A Rare Disease.   MAY 2015   To see this article Click on the DOWNLOAD FULL TEXT button in the middle / right hand side of the page — it is free for the full article.

Relapse Common in ANCA-Associated Vasculitis but survival and ESRD-free survival have improved since the 1980s — 02/08/2016  In a large multicenter inception cohort of patients with AAV and renal involvement, the only predictor of better outcome was serum creatinine at diagnosis, “suggesting that early detection is fundamental to improving ESRD-free survival in AAV,” noted Rennie L. Rhee, MD, from the University of Pennsylvania, Philadelphia, and colleagues.

 

 

 

 

 

 

 

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