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Pearl’s life was changed radically by: loss of vision due to GCA late in 1998; the bloated torso and facial features which is the effect of prednisone therapy; and six months later the onset of leg arteries ischemia and stenosis (blockages and narrowing). Several tools were initiated to cope with her new illness:
While all of these unique observations were valuable for Pearl the last one proved to be most informative. While CrP wasn’t measured the first year the sed rate was observed to have a normal level of < 10 mm/hr in the first 2 months. Values of normal sed rate varied from < 15 (defined by the Rheumatologist) to < 42 (calculated using a formula based on age and sex by an authoritative source). In managing Pearl’s GCA the Rheumatologist started with < 15 but violated his definition often in striving to minimize the steroid dose. At what level he would decide to take action with a prednisone increase was unpredictable. This demonstrated an undisciplined practice which I thought was uncharacteristic of him. Had we managed Pearl’s illness with the < 10 value of normal she might have had significantly improved quality of life.
The other significant recommendation in the paper was the use of CrP and sed rate only, rather than relying on symptoms to manage the prednisone dosing. Pearl lost total vision momentarily on 12/10/04 – 5 years into her illness. Her CrP had been 1.2 (slightly elevated) and sed rate was 32 (elevated) a month before. She was taking 8 mg/day of prednisone at the time of the blood test and 7.5 mg when vision was temporarily lost. This was one of those occasions when the Rheumatologist violated his self-imposed guideline and didn’t increase prednisone when sed rate exceeded his sed rate normal of < 15 mm/hr. This was the scenario Dr. Hayreh’s paper was trying to avoid by strictly adhering to dosing according to CrP and sed rate. Waiting for Pearl to have the symptom of vision loss was almost a disaster – fortunately it wasn’t permanent and high prednisone prevented permanent damage to her good eye at that point. However, the smoldering illness took its toll in her shoulders soon after the vision loss.
Chronological overview of Expanding Management Tools
12/14/98 – I started a Microsoft Word file journal of Pearl’s doctors’ visits and events she experienced. I included notes from visits before and leading up to diagnosis of GCA through the date of her death.
1999 – I generated a Microsoft Excel spreadsheet of significant elements including all blood tests, prednisone dosage, sed rate, CrP, doppler scans, flares and events of interest by date starting in November 1998 and ending with her final hospital treatment on 10/19/07.
3/30/00 – We visited a renowned remote Clinic for a second opinion about several items: GCA & PMR, Vasculitis (Peripheral arterial disease of legs and feet) and Chronic Sinusitis. The Clinic Rheumatologist assigned to treat Pearl was a specialist in GCA/PMR, having co-authored several medical journal papers – we had one he published in 1980 in our personal library. His findings and recommendations included:
Pearl’s leg artery problems appeared to be arteritic because of rapid changes in circulation; use three parameters for management of GCA – C-reactive Protein (CrP), sed rate and clinical symptoms; take Plavix to promote circulation since platelets are elevated; add hemoglobin as an item of interest to track.
4/10/00 – The Rheumatologist started to use CrP in addition to sed rate to manage Pearl; Plavix was started and Trental discontinued.
4/12/00 – First check for CrP showed it was elevated at 1.2 mg/dl (normal is <1 mg/dl).
4/20/00 – Warning bulletin issued for users of Plavix – it can cause serious bleeding. Continued use of Plavix became controversial between the local Rheumatologist and the Clinic Rheumatologist, the local wanting to stop it. The Clinic Rheumatologist advised continuation because of the significant leg artery blockages.
11/11/00 – I joined an internet support group named SAVVY. It is composed of vasculitis patients and caregivers from around the world. Most members are located in the US, Canada, Australia and England. This became a good way to share experiences, treatments and concerns.
11/15/03 – Blood test showed CrP at 1.2 and sed rate at 32 – the Rheumatologist continued prednisone dose at 8 mg/day. Pearl decreased to 7.5 mg/day two weeks later, continuing to drive prednisone down to eventually taper off as instructed by the Clinic Rheumatologist earlier. His advice was to taper off no matter what CrP and sed rate indicated – don’t measure them because GCA/PMR should have been gone in 3 years.
12/11/03 – Emergency visit made to see the Ophthalmologist because Pearl lost vision momentarily in her good eye last evening while shopping in the mall. Increased prednisone to 60 mg/day for 3 days, then gradually tapered down to normal dosing over the next week of so.
8/5/04 – I referred the Clinic Rheumatologist to a recently published article by Dr. Sohan S. Hayreh of the U of Iowa Ophthalmology Dept that found only 8% of GCA patients are ever able to completely get off of prednisone. He disagreed, stating the reverse is more accurate – that only 8% aren’t able to stop. This article provided insight regarding parameters to observe for GCA inflammation, including hematocrit which hadn’t been identified earlier. Parameters listed were: elevated sed rate, CrP, platelets and WBC (white blood cells); and depressed hemoglobin and hematocrit. Additional parameters I found in other publications were: elevated alk phos and depressed RBC (red blood cells). Dr. Hayreh’s article can be found in:
Ophthalmologica. 2003 Jul-Aug;217(4):239-59. PMID: 12792130
Management of giant cell arteritis. Our 27-year clinical study: new light on old controversies.
Hayreh SS, Zimmerman B. Department of Ophthalmology and Visual Sciences, College of Medicine, Iowa City, Iowa 52242-1091, USA.
Dr. Hayreh provides much of the information from that article in the following website: http://webeye.ophth.uiowa.edu/dept/GCA/index.htm
Details of events and Drs’ visits from 3/30/00 thru 6/7/00, and 7/21/04 thru 8/11/04 are provided in Appendix 7.