Giant Cell Arteritis - An Elusive Odyssey

Mind Body & Soul Book Review - Giant Cell Arteritis - An Elusive Odyssey by James Rupp. 168 pages, published by Lulu. 

This book is dedicated to Pearl Rupp, James's wife, whose photo fronts the text. We are introduced to Pearl and to her illness, Giant Cell Arteritis - inflammation of large and medium blood vessels - and its related, disabling condition, Polymyalgia Rheumatica. We read of symptoms, tests, scans, diagnoses, flare-ups, procedures, medications, treatments, X-rays, biopsies, disabilities, complications, drug conflicts, and the advice of numerous doctors and health care workers. There are confusions, speculations and assumptions and doctors who argue with each other about who has most wisdom in treating this extraordinary illness which requires an individualised care plan.


The two illnesses are explained with possible triggers suggested, and the genetic component is mentioned. You will find plenty of words to look up: sed rates, steroid sparing methotrexate, bursitis, tendonitis, aortic aneurism, claudication, etc., until you, like James have become an expert!

The end section of the book is extremely sad if not tragic because Pearl lost her life after a 9 year struggle with this most common form of vasculitis. The patience and kindness with which James cares for Pearl comes across vividly within the text.

James Rupp has a Bachelor of Science degree in Mechanical Engineering and worked for 44 years in the aerospace industry in the USA where they lived. This is a detailed account, written in sections for easy access to important information. Much of Pearl's treatment was paid for through a Medicare and other private insurances. In the UK we would not get a fraction of this treatment offered to us on the NHS!

Though the book was written a few years ago, the treatment now is generally the same as it was then. There are warnings of sight loss and the caution of any medication which causes constriction rather than dilation of the blood vessels. Pearl's two rheumatologists were unaware of some basic published data on GCA treatment and relied on medical school information from decades earlier. They seemed reluctant to consider possible improvements in her care plan.

March is Auto Immune Awareness month, and the GCA-PMR sisterhood is a very neglected topic amongst immunologists. I wanted to publish my review of this personal story by a devoted husband who did his best for many years to support his loving wife with giant cells that inflamed her arteries.

Review by Wendy Stokes, a fellow sufferer.

Addenda from James Rupp: 
Tocilizumab is now available for GCA patients; it has been effective for some patients in shortening the duration of illness; it does have a risk of side effects but it reduces the total amount of steroids generally needed to suppress GCA inflammation. Trials have been conducted which resulted in it being a recommended treatment strategy for some GCA patients.