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Symptoms of GCA can be mysterious – unless several occur simultaneously each easily may be attributed to reasons other than GCA. Only in retrospect can we see the telltale signs of an illness we knew nothing about then. Even when several struck Pearl at once in a debilitating manner they weren’t recognized as signs of GCA. The serious illness became overtly symptomatic within months of our relocation to "paradise".
Unexplained weight loss. This is the first symptom that I can recall, occurring while still living in Indiana during the year following retirement. A cousin who hadn’t seen Pearl for several years noticed Pearl’s gaunt appearance but didn’t mention it at the time. I didn’t notice because I saw Pearl daily so it went unobserved. She always kept her weight in a small petite size. She believed that "less is better" so I’m sure she wasn’t concerned if aware of it. This same symptom recurred nine years later, a few months before her death.Unusual stress. Our bodies produce cortisol via the hypothalamic-pituitary-adrenocortical gland axis and in women some is produced by the ovaries. At times of stress the body produces more than normal to withstand the stress. Since Pearl’s ovaries had been removed perhaps her cortisol production was impaired somewhat. We didn’t have it measured since it wasn’t a concern to us then. When we were planning our move to Florida in April, 1998, Pearl asked me to find an alternative to her driving her car down – a two-day trip. She felt strongly about it but I thought it foolish. It was a simple chore for her to just follow me; she was an accomplished driver. I’m sorry I wasn’t attuned to her body’s needs at that time. She drove the car and two months later encountered another symptom.
Jaw claudication. In June, 1998, sore jaw muscles interfered with Pearl’s ability to chew foods and open her mouth properly. An Ear, Nose, Throat Doctor gave medication for ear inflammation, and recommended that Pearl see a dental specialist for possible temporomandibular jaw disease (TMJ). Pain cleared in a couple of weeks – she didn’t see a TMJ specialist. Pearl had been to a dentist several years earlier for potential TMJ – he designed an internal bridge for her to wear during the day. Since we knew it wasn’t TMJ and it cleared up on its own in a few weeks we didn’t pursue it.
More unusual stress. Pearl had foot surgery in September, 1998, to repair a hammertoe condition resulting from neuroma surgery on the toe three months earlier. Betadine was liberally applied to her foot and ankle for the surgery. Within several days a thick layer of skin sloughed off just where the betadine had been applied. Since she had been allergic to iodine we weren’t sufficiently concerned to investigate the condition. We also were fooled by the successful use of betadine in the earlier toe surgery. In retrospect it was another indicator of potentially insufficient cortisol being produced and of a lurking immune system problem.
Pain all over. Pearl awoke one morning in October, 1998, to pain all over her body. She couldn’t get comfortable lying down, sitting or standing. Her scalp was too tender to touch. We knew we had to find a doctor immediately. The hospital emergency room (ER) - which is where we should have gone because of the intensity and total body attack of the unusual pain - wasn’t even considered. We had been to several specialists in the short time we were in Florida but hadn’t been successful in finding an Internist for such a situation. I found a family practice physician (FFP) nearby who could see her on an emergency basis that day.
The FFP examined her sinuses, determined she had a bad sinus infection and prescribed a five day course of antibiotics. We returned in three weeks after completing the course of antibiotics with no change in her painful condition. He prescribed a second antibiotic regimen for the stubborn sinus infection – this time for 15 days. He drew blood for testing and prescribed an X-ray of her sinuses. After that failed to affect her condition he prescribed a third course for 10 days. He sent her to an orthopedic surgeon to evaluate her knee, pained from a fall two weeks before the "pain all over" started. The third course had no effect; the X-ray confirmed sinus involvement. The Orthopedist wanted to do knee surgery for a minor old damaged ligament condition he observed which had nothing to do with all of her body pain. Our disappointment was immense with the orthopedist diversion and lack of identifying the cause of her overall poor and painful condition.
Elevated Alkaline Phosphatase. On November 9, 1998, a blood test showed two out-of-range items: elevated potassium and alkaline phosphatase (alk phos). The FPP pursued the potassium with two follow-up tests but ignored the alk phos which was very high at 149 (normal range is 20-125). High alk phos is a definite marker to raise suspicion of GCA. When prednisone treatment is given, the alk phos returns to normal if the cause was GCA.Temporary loss of vision in right eye. Two episodes of temporary loss of vision were reported to the FPP on December 2, 1998. These had occurred for one hour, then again a week later for 2 hours a week before the appointment. He didn’t advise these were medical emergencies warranting visits to the hospital ER – these were unrecognized strokes (temporary ischemic attacks) and since they cleared on their own we didn’t understand the gravity of the episodes.
A brief medical history and chronology of recent events prior to diagnois is provided.
Synopsis of Pearl’s medical history – before 12/11/98
Migraine, tension headaches and allergies common for many years; non-smoker; non-drinker; Age 65; moderately active until mid-1997 when a foot neuroma developed causing pain in walking, her main form of exercise. Gall bladder removed at age 56; hysterectomy at age 63. Foot surgery in June, 1998, to remove the neuroma, then hammertoe surgery on the same foot in August, 1998. Treated by an Allergist and Gynecologist in previous few months. All major organs functioning well – weight 125 lbs., height 5’3", vital signs, blood pressure all normal. Her selection of foods is restricted because of migraines and allergies. Annual flu shot received a week before incurring pain all over.
Chronology of events leading up to tentative diagnosis of Giant Cell Arteritis on 12/11/98
6/2/98 - Sore jaw muscles interfered with ability to chew foods. Ear, Nose, Throat Doctor gave medication for ear inflammation, and recommended that Pearl see a Dental specialist for possible TMJ. Pain cleared in a couple of weeks – didn’t see a TMJ specialist. Pearl had been to a dentist several years earlier for potential TMJ – he designed an internal bridge to wear during the day.6/12/98 – Podiatrist did in-office surgery to remove a neuroma between 2nd & 3rd toe, right foot.
9/8/98 – Podiatrist did in-office foot surgery to correct hammertoe, 2nd toe on right foot. Surgery involved some bone repair in the toe. Betadine allergic reaction caused skin to slough off where applied on right foot and ankle.
10/1/98 - Received Flu shot. Pearl fell hard on her knees on tile floor a week before the flu shot, resulting in knee pain but no visible problems.
10/9/98 - Pearl visited a family practice physician (FPP) complaining of skin/muscle/joint soreness all over and fatigue. Started a 5-day anti-biotic treatment for sinus infection.
10/30/98 - Pearl visited FPP for follow-up – symptoms hadn’t changed. Started a new 15 day anti-biotic for sinus infection.
11/9/98 – Pearl visited FPP for follow-up – symptoms hadn’t changed. Drew blood for test, scheduled X-rays for sinuses and knee joint - knee because of reported fall on tile on 10/1/98.
11/16/98 - Visited FPP for follow-up – symptoms hadn’t changed. Started a 3rd anti-biotic regimen – 10 days - for sinus infection. Drew blood for repeat of test for potassium – was elevated in previous test. Sent Pearl to an Orthopedic Clinic to evaluate knee X-rays which showed a bone chip present in left knee – was it an old event or a recent one? Dr advised it was an old event but recommended she have surgery sometime to repair the torn ligament. This had nothing to do with Pearl’s pain – no follow-up.
12/2/98 - Visited FPP for follow-up – symptoms hadn’t changed – still in extreme pain all over. Reported during this visit or the earlier one that Pearl had lost vision in her right eye for a couple of hours during a migraine episode, but sight had returned OK. Vision was lost in that eye a couple of weeks before but lasted only an hour. Potassium reading still high on 2nd test. Repeat blood test at another lab to get better results.
12/4/98 - Had blood test (potassium only); results were the same as the earlier tests.