VF in the News

Pearl’s Story

My name is James. My wife, Pearl, became ill with Giant Cell Arteritis (GCA) and Polymyalgia Rheumatica (PMR) in 1998 at age 65. It was diagnosed after she lost vision permanently in one eye. We learned from that event that GCA is a serious illness and demanded our complete attention and vigilance. Her illness persisted for nine years until death due to unknown cause in 2007.

During her treatment many questions arose which could only be satisfied by increasing our knowledge of her illnesses and symptoms. Medical journal articles were identified via PubMed on the internet by entering the topic of interest in the search block. Obtaining the full text of the articles was more difficult.

We were fortunate to have the interest of a physician on the board of two of the hospitals in our area that have medical libraries. While many journal articles are available for copying in the library those that they don’t have journals for had to be ordered through the library. Those articles were ordered through the physician on their board. A few articles have full text available on the internet. The abstracts and articles were very helpful in understanding the illnesses and for discussing treatment options with Pearl’s doctors.

Some were obtained for special medical concerns of Pearl that weren’t related to GCA or PMR. Some reflect avenues of study that were suspected of being contributory factors or secondary issues of GCA and PMR.

A significant effort was made to understand peripheral arterial disease (PAD). Pearl’s leg arteries became ischemic or stenotic (blocked or narrowed) within six months of her diagnosis and start of treatment with prednisone. Throughout her illness there was disagreement among her specialists (rheumatologists, vascular surgeons, orthopedists, cardiologist, ophthalmologist and internists) about the cause of the arterial circulation problems in her legs.

GCA can cause peripheral (arms or legs) arteritic ischemia and stenosis while atherosclerotic plaque can be another common cause. The common opinion throughout her illness by the rheumatologists and some of the others was that Pearl’s blockages were due to atherosclerosis. Yet, the preponderance of evidence pointed to arteritic involvement. Her leg circulation was managed throughout those years with prednisone, indicating arteritis. Too little a dose and her circulation became impaired – increasing the dose improved circulation to her extremities. Her legs and feet were saved repeatedly during her illness by increasing prednisone when her doctors wanted her to taper off. The opinion expressed was that GCA is a self-limiting disease of one to three years duration. Another thought expressed was that GCA doesn’t affect leg arteries. Both opinions are proven false by many medical journal articles yet those attitudes persisted.

Other damage she experienced were impaired shoulders, necrosis of a shoulder blade likely due to GCA impaired circulation, and body pain and joint swelling typical of PMR.

Treatment options were studied for management of the illnesses including alternative medications and steroid-sparing ones. Article 130. was found to be of significant benefit in understanding GCA and management of the illness. Dr. S.S.Hayreh, the author, has published a significant amount of the content of his paper on a website of the University of Iowa Ophthalmology Department.

I have compiled Pearl’s experiences in a story titled “Giant Cell Arteritis – An Elusive Odyssey”. Click here to read.

To view a detailed list of medical journal research articles compiled by the author, click here.

Published: January 2008

To read more stories, please visit the Vasculitis Stories landing page.