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Giant Cell Arteritis; One Man's Exciting Experience
GCA - also known as Temporal Arteritis

This is a May 2018 update and supplement to the book which has a full explanation of GCA and its treatment. The book is on Amazon for a minimum price.
GCA is an emergency and can cause some loss of vision. If you may have GCA consult a physician immediately.


Unusual, but dangerous complication:

"Increased awareness of the different manifestations of GCA is crucial for diagnosis of patients with isolated lower extremity vasculitis. It is imperative that GCA be considered in the differential diagnosis of unexplained lower extremity claudication, . . . Vasc Surg Cases Innov Tech. 2017 Sep; 3:3; 119-122.

Large artery involvement in GCA can affect the legs. Bilateral and rapidly progressive intermittent claudication of recent onset is the most common symptom, even in the absence of headaches or the presence of a silent inflammatory syndrome. Early diagnosis allows rapid initiation of steroid therapy, which is usually able to generate a sufficiently good response to avoid vascular surgery." J Rheumatol. 2001 Jun;28(6):1407-12.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3085840/#R8

Lower Extremity Vasculitis in Polymyalgia Rheumatica and Giant Cell Arteritis Tanaz A. Kermani, MD and Kenneth J. Warrington, MD .......

Summary

Leg involvement in GCA and PMR may be associated with significant morbidity and is likely under-recognized clinically.

....... Although clinically significant leg vasculitis appears to be rare in GCA, this can cause significant morbidity and requires prompt detection and treatment.

Similarly, positron emission tomography studies in PMR patients may also show subclinical vascular inflammation in patients even when temporal artery biopsy is negative.

In other words: one can lose one's legs or die from PMR with no diagnosis of GCA. This may have happened to a good friend of mine.

Book Table of Contents
  • Page
  •  8  What is GCA (Temporal Arteritis) ?
  •  8  Diagnosis of GCA
  •   9  GCA Symptoms
  •  9  Polymyalgia Rheumatica (PMR)
  • 10  My GCA Diagnosis
  • 11  Having Fun With GCA and Prednisone
  • 12  Treatment of GCA -- Prednisone
  • 14  The Management of GCA
  •   14 Blood Tests -- ESR or PV and CRP
  • 15  Normal Healthy Values of ESR
  •   17 The ESR and CRP can Mislead
  •   18 When Normal is not Normal
  •   20 Controversy: An Ophthalmology Department Speaks
  • 22  Data is Valuable
  • 24   Finding My Normal ESR and CRP
  • 26  Withdrawal Symptoms: Addisonian
  • 27  Prednisone Side-Effects
  • 30  The Instructions of Experience
  • 32  Chronological Summary of My Experience
  • 37  Bibliography
  • 39  Support Groups
  • 40  Appendix I  Leg Discomfort Incident
  • 41  Appendix II  Tesellopsia Hallucination
  • 42 Appendix III The Cost of GCA

My history from March 2009 to May 2018 is summarized in the graph below: My esr-crp-graph annotated-3

April 2016 update. On January 27-28, 2016 I had a 2-day emergency-ward hospitalization for profound weakness. I have no other word to describe my problem. On Thursday I had difficulty dressing in the morning and dressing for bed. I made it through the weekend but on Tuesday I put on my robe and my son took me to the emergency ward.

Many tests were made -- including blood, x-ray, CT-scan, echocardiograph, ECG -- but the cause of my being there was not determined. I did have atrial fibrillation, presumably started with this incident. I had no fever. Suggested diagnoses included: bronchiectasis and congestive heart failure. Xray showed the bronchiectasis, congestive heart failure seemed not the case. The hospital doctor apologized for giving me an oral antibiotic as a precaution "in case".

Later discussion with the cardiologist agreed that the cause of my emergency hospitalization was not determined.

However, the treatment included immediate "stress corticosteroid dosing with hydrocortisone." This seems to be a common emergency procedure. On release, I resumed my 6 mg prednisone schedule.

On February 8, twelve day from the hospital, my ESR was 40 and my CRP was 20 -- very high for me. Both have returned to my normal range after a few days of increased prednisone (10 mg quickly tapered to 6 mg). Perhaps the inflammation had nothing to do with GCA.
My ESR and CRP have diverged for the first time. ESR is high and CRP normal. This *may* be caused by the warfarin I am now taking to reduce the likelihood of stroke caused by AFib. Commonly called a "blood thinner", warfarin is a vitamin K antagonist. It has some blood thinning behavior and this would increase the sedimentation rate, ESR.

My AFib bad heart rhythym continued through 2016 but since January 2017 my rhythym has been good.
I may have more details in my separate web page: One Old Man's Experience: Atrial Fibrillation"

June 17, 2016 -- apart from three years of increasing leg weakness and uncertain sense of balance (no cane needed) and usual old man's prostrate annoyance, I'm doing fine. Giant Cell Arteritis seems quiet after eight years but still taking prednisone, 5 mg planning 4 mg etc. -- no longer of much interest. AFib no longer interesting. BPH boring.

End of July 7, 2017 Updateto TOP OF THIS PAGE

May 21, 2018 update:

Going down to 2 mg of prednisone was an error. C/RP increased as well as ESR. On my own, and on doctor's recommendation, I returned briefly to 5 mg then 4 and now alternating between 4 and 3 mg.



Support Groups

There are support groups on the internet for GCA and PMR.
A good UK forum:Polymyalgia Rheumatica and GCA There are local groups in the UK. This is a valuable US support group:
A member of that group, JamesWRupp has collected countless references and much information about GCA. Join one or more of these groups and exchange experiences.
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