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Giant Cell Arteritis; One Man's ExperienceGiant Cell Arteritis, GCA - also known as Temporal Arteritis, TAMason A. Clark
Giant Cell Arteritis EmergencyGCA is an emergency, can cause some loss of vision. If you have or may have GCA you must consult a physician immediately and you must participate intelligently in the treatment. This post describes my exciting GCA experience with a favorable result. I am not a medical doctor. Some of my understandings of my own experience may differ from that of my doctor and your doctor.This report is not medical advise. It is simply one person's experience with GCA.
(If you wish, you may jump to a 20-minute VIDEO (a movie).
but I recommend reading the text on this page -- or the book.)
A detailed version of this web-page article may be purchased on Amazon as a 45-page book.
Or the book can be read here, but should be printed for easier reading. the book: "Giant-Cell Arteritis -- One Man's Experience" (You need Acrobat Reader to view this. You probably have it. If not, get it here. (free)) Giant Cell Arteritis Definition by Mayo Clinic staff"Giant cell arteritis (GCA) is an inflammation of the lining of your arteries -- the blood vessels that carry oxygen-rich blood from your heart to the rest of your body. Most often, it affects the arteries in your head, especially those in your temples. For this reason, giant cell arteritis is sometimes called temporal arteritis or cranial arteritis. "Giant cell arteritis frequently causes headaches, jaw pain, and blurred or double vision. Blindness and, less often, stroke are the most serious complications of giant cell arteritis. "Prompt treatment with corticosteroid medications usually relieves symptoms of giant cell arteritis and may prevent loss of vision. You should start feeling better within days of starting your treatment."
Diagnosis of Giant Cell ArteritisAmerican College of Rheumatology recommends that GCA be diagnosed if three of the following are true:
If GCA is suspect, prednisone should be given immediately to prevent loss of vision. GCA symptoms reported in the literature
My Giant Cell Arteritis Diagnosis
Prednisone Withdrawal -- the Story of GCA TreatrmentThere are three objectives:
GCA may be be self-curing but may last from six months to two years or longer. During its life it may do great damage. Treatment is essential. Prednisone wards off the damaging inflamation, giving GCA time to subside, but does not cure GCA. Withdrawal of prednisone is experimental. Paraphrasing the words of William Blake:
The road of excess leads to the palace of wisdom.
We never know how much is enough until we know how much is not enough. The GCA fire is hiding under the carpet of prednisone.
GCA symptoms at this stage may be very subtle or the first warning symptom may by some degree of vision loss. For that reason, caution is required. In addition to the clue given by symptoms, blood tests are used.
See the important ESR Appendix Prednisone withdrawal is an exciting and dangerous, but necessary game.
The following description of my experience is easy to analyze long after the fact.
A detailed chronology of my experience is given in the book. The graphs below shows my prednisone withdrawal, the rise and fall of ESR and CRP, and important events.
Giant cell arteritis smolders under the prednisone carpet, waiting its
chance to flare
The new patient and doctor will not know the patient's normal ESR and CRP. The normals for the population do not apply. They are well-known but useless in managing the prednisone for a particular patient. The individual's normal can only be learned by observation as treatment proceeds. Dr. Hunder, Professor Emeritus at the Mayo Clinic College of Medicine recommends:
"Results of ESR and CRP testing should be interpreted in the context of the patient's typical values prior
to the onset of illness, when available, and the patient's age."
The patient's healthy ESR and CRP are not usually known and must be learned from the lowest values seen during treatment. It is essential to understand that the population normal so ofter mentioned may be dangerously misleading in the on-going treatment of an individual. The chart below shows that more than 84% of men and 66% of women have a normal ESR less than eight (8).
CRP also has a distribution among the healthy population: The values less than two or three are only measured by a high-sensitivity test. These hsCRP values *may* be an indicator for heart condition. With GCA, the values are likely to be greater than two or three. See my chart below for an example of the relation between ESR and CRP. ![]() Both ESR and CRP increase somewhat with age and both are slightly higher for women. ![]() Looking at the lows on the graph below, my normal ESR appears to be between four and ten, perhaps six.
My history is summarized in the graph below: ![]() My experience is superimposed. ![]() Here are eight examples of actual prednisone esr/crp graphs of people I have known. ![]() Each GCA / PMR patient differs, because of differences in them or differences in their treatment. The Management of GCA with PrednisoneThere is a controversy about the guides for management of prednisone.Rheumatologists are rightly anxious to reduce the amount of prednisone. Prednisone has serious side effects. Opthalmologists are rightly anxious to prevent loss of vision, a too-common effect of GCA. Dr. Hayreh summarizes this controversy in his articles and in this letter to me:
The cause of confusion about the role of ESR and CRP in the management of GCA is due to the following reasons:
Thus, the only way to prevent blindness due to GCA is by ESR and CRP estimations.
Sohan Singh Hayreh, MD, MS, PhD, DSc, FRCS, FRCOphth (Hon)
Avoiding flares by the slow reduction of prednisone may result in the use of less prednisone.
The Paradox: Flare First, Treatment AfterMany articles on PMR and GCA make a statement such as this:"A rise in ESR or CRP without clinical evidence of a flare does not justify a change of corticosteroid therapy." "An isolated rise in ESR or CRP does not justify an increment in the prednisone dose." But, in the same paragraph one may find, "a high relapse rate that may be caused by rapid reduction of prednisone leads to an increased cumulative dose and subsequent adverse events." It is not a paradox that slow reduction uses less prednisone than a too-fast reduction. The flare let loose by the fast reduction forces the use of more prednisone.
AppendicesESR and CRPUnderstanding Blood Tests --Return to textESR and CRP are measures of inflammation. They support one another.
These blood tests, along with symptoms, guide treatment. For ESR the population healthy values, increasing with age from 55 to 90
This is data from 3910 healthy Norwegian adults. To determine YOUR healthy value look for low numbers
as you go along in your treatment.
A graph of ESR and CRP against time is helpful -- just pencil and paper My fancy graph was shown above. See on the graph that my normal ESR seems to be about six -- something among the lowest values. The values above ten were certainly not normal for me. It is apparent that we (my doctor and I) were withdrawing the prednisone too fast. At the early ESR of 15 I had a flare with two temporal arteries swollen that could have cost me some loss of vision if they had been optic-nerve arteries. During the times of ESR numbers above ten, there were weak, fleeting head-pain symptoms -- symptoms that could be denied, but the numbers revealed the inflammation. Inflammation of my leg arteries brought the day when the ESR and CRP both screamed "STOP" and I skidded to a stop on prednisone withdrawal, perhaps barely in time to save my legs from more serious artery inflammation. Such inflammation does the arteries no good. Notice that the ESR and CRP may be raised by other inflammations, such as the 17 and 3.6 at a common cold. It may also be worth noting that keeping a careful record may reveal a laboratory error. Errors do happen and could cause an error in treatment. Symptoms of Cortisol Insufficiency (Addisonian)Return to textA deficiency of the adrenal cortex hormone, cortisol, is an Addison's-disease crisis.
I had leg pain on Sunday, lethargy all week, no appetite after Thursday.
Upon awakening in a sweat the following Monday morning, my sitting or standing blood pressure was 70/50 and I could barely walk.
I experienced the warnings marked **.
BibliographyThere are many reliable sources of information. GCA is complex and there some disagreements. The internet is easily searched for "gca temporal arteritis". Major clinics offer articles on GCA Mayo Clinic
Cleveland Clinic
Johns Hopkins
There are two chapter in a free book that provide much detailed information about GCA, intended for reading by specialists: These may be downloaded in .pdf Acrobat format and printed: Ch. 14 "Diagnosis and Treatment of Giant Cell Arteritis (Temporal Arteritis)" Regarding attacks of the arteritis on other arteries than the head: Ch. 15 "Extra-Cranial Manifestations of Giant Cell Arteritis" The
Opthalmalogy Department of the University of Iowa hospital
has been referenced in the text above. Their articles are must reading for anyone with GCA.
They give a perspective on treatment that differs from the standard practice of rheumatologists, who are rightly worried about the side effects of prednisone.
James W. Rupp's book telling the story of his wife's long and difficult medical history:
Here is a video, also on YouTube, which adds to this web page and the book. Watch for me, the goats, two controversies, many graphs, and a walk at the end. There is a one hour Vasculitis Foundation talk about GCA on Youtube: VF SYMPOSIUM 2010 Volume 05 at: "Large Vessel Vasculitis" Cornelia Weyand, M.D., PhD, Stanford University Curry Koening, M.D., MS, University of nUtah Doctor Weyand expresses strongly the rheumatology belief that symptoms, not laboratory tests, are a safe guide to prednisone withdrawal. Doctor Hayreh, an ophthalmologist, differs -- stating that only ESR and CRP should be used to manage prednisone withdrawal. Treatment requires that the serious harms caused by GCA be balanced against the serious side-effects of prednisone. Watch my own movie, above, for a discussion of this.
Here is a YouTube video visit by Dr. Gary Hoffman of the Cleveland Clinic with a woman who lost vision in one eye and a similar video for a man with GCA and no complications.
Warning ! Be selective of other GCA YouTubes.
Some are misleading, useless, or ugly.
Support GroupsThere are several support groups on the internet for GCA and PMR.A friendly, informative, and helpful group is: PMR and GCA Forum in Great Britain This is a forum with many topics. Look for the special one: "EILEEN'S INPUT - VALUABLE INFORMATION ON PMR/GCA" Other threads (subjects) wander into being a women's tea party (a man's perspective). This has the advantage of maintaining a group of attentive, experienced members ready to share. Closely related UK sites are: Polymyalgia Rheumatica and Giant Cell Arteritis
An American group, responsive but less active, is: health.groups.yahoo.com/group/giantcellarteritis The "Inspire" group is becoming more active: www.inspire.com Search for GCA or PMR. Two other groups have personal experiences but are harder to use and not very active: experienceproject.com drugs.com Have a comment or question? e-mail to Mason Clark (Do remove "REMOVETHIS" from the address.) to Top of the page to Home Page |