Surviving Temporal Arteritis: A Personal Experience

by mulberry

Temporal Arteritis is a potentionally deadly disorder. Hopefully, my mother's experience with it may answer questions you have about TA.

Photo by Patrick J. Lynch
Photo by Patrick J....

All About Temporal Arteritis

In October 2010, my 83 year old mother was diagnosed with temporal arteritis. It was a condition that I was unfamiliar with at the time of her diagnosis. However, I was to learn much more about it over the coming weeks.

It's acutally a very serious condition but when intervention is provided in time, it appears that it can be dealt with very successfully. For this reason, I wanted to share some of the information that I learned, to increase awareness and potentially alert others to the symptoms so that this condition doesn't go undiagnosed with devastating results.

I am not a physician, therefore the information on this page doesn't represent medical advice of any type, but it is my summation of what I learned during my mother's care.

My Mother's Temporal Arteritis Diagnosis

In the summer of 2010, my mother was being seen by an ophthamologist for glaucoma. She underwent a laser procedure which, at least to this point, was successful in controlling the condition. During a routine visit a couple of months later to check on the status of the pressure in her eyes, she mentioned in passing that her head, and particularly her left temple was very, very sensitive. It was so sensitive that at times, it made it hard for her to lay on a pillow to sleep at night.

Her ophthamologist was immediately concerned about temporal arteritis, also known as giant cell arteritis. He explained that this condition was an inflammation in the arteries, an inflammation that could potentially cause sudden and irreversible blindness, stroke, and so forth. Due to the possibility of such a negative outcome, he immediately prescribed Prednisone to begin reducing the inflammation. He also ordered a blood test to determine if there were indeed signs of inflammation in her temporal artery.

She immediately began taking Prednisone and had a blood test. The blood test indicated that there were signs of inflammation but a biopsy would provide more conclusive results. Within a week she had the biopsy. Biopsy results indicated that there was evidence of arteritis, and therefore, her regimen of Prednisone was to continue. Because my mother also has osteoporosis, taking Prednisone was a tricky matter as it can damage bones by blocking calcium.

Her regular physician then took over her care in regards to the arteritis. She now has to have periodic blood tests to check for signs of inflammation as the doctor very gradually reduces the Prednisone.

 

Continuing Treatment

Within a week or two my mother was no longer having pain in her temporal area. And more importantly, she suffered none of the other more serious effects of this condition. However, it may be years before she is off of the medication.

Over the course of a approximately a year, her dose of Prednisone was decreased each month. It didn't require a doctor's visit, just a quick trip for a blood test to check her SED rate, and, if her inflammation was still down, the physician ordered a lower dose for the coming month. Dosage was decreased 1mg each time. 

My mother takes calcium with Vitamin D supplements and also received Reclast injections yearly in an effort to stop her bone loss. My understanding is that even for people without a degenerative bone disease, bone saving treatments like these are sometimes recommended when initiating any corticosteriod treatment, like Prednisone, in order to help minimize the bone loss.

After 11 months, she was down to only a 5mg dose.  In the intervening time, she had experienced a compression fracture as a result of her osteoporosis which was exacerbated by the prednisone. She underwent balloon kyhphoplasty to maintain the affected vertebrae in an uncollapsed state. It was successful in this and in eliminating the associated pain. 

Unfortunately, inflammation began to increase again at 11 months and her dose at this time is back up to 20mg. I have to assume that her treatment will contine for at least 12-18 more months.

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What is Temporal Arteritis?

Temporal Arteritis is an inflammation in the blood vessels, specifically those that supply your head with blood. It is sometimes called Giant Cell Arteritis and can effect blood vessels elsewhere in the body. Due to the inflammation, blood flow is reduced. This means that the areas supplied by the affected blood vessels can suffer damage.

What Causes Temporal Arteritis?

The cause of temporal arteritis isn't known. It is associated with a faulty immune response but researchers aren't sure what triggers it. It does happen much more frequently in women and does seem to run in families. Arteritis typcially occurs after age 50.

What Happens If You Have Temporal Arteritis?

A number of symptoms may crop up if you have giant cell or temporal arteritis. However, the most severe outcomes include blindness, stroke (CVA), or an aortic aneurysm.

Blindness can occur very suddenly due to the restricted blood flow and is irreversible. A stroke can occur due to blood clots and result in death or permanent disability. If an aneurysm forms (a ballooning out of the vessel wall) it may burst, resulting in severe internal bleeding and potential death.**

Clearly, anyone with temporal arteritis needs to be diagnosed quickly and receive treament to prevent any of these catastrophic events.

**My mother already has an abdominal aortic aneurysm that is routinely monitored. So it was particularly alarming to learn of this particular risk.

What Are The Symptoms of Temporal Arteritis?

There are many symptoms of temporal arteritis. For a comprehensive look at them, you can refer to the Medline Plus website.

Some of the more common symptoms that my mother's physician discussed were jaw pain, loss of appetite, weight loss, headaches, scalp sensitivity, joint/stiffness, fatigue, double vision, and vision loss.  My mother's medical history definitely included 6 of these 9 symptoms although it was not clear that they were all related to the temporal arteritis. 

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Diagnosing Temporal Arteritis

Obviously the first step in diagnosing arteritis is for a physician to ask about related symptoms such as those mentioned above. After this, a blood test may be ordered. My understanding is that the blood test will not provide a definitive diagnosis but it can provide an indication that more testing (a biopsy) is warranted. The blood test can indicate only that there are signs of inflammation. (You can read more about the specifics of the blood test on the eMedTV site.)

If the blood test indicates there are signs of inflammation, then a biopsy will be done. The biopsy will give the lab a chance to actually look at a section of the temporal artery. They can examine the cells under a microscope to see if they are normal or if "giant cells" are present.

The biopsy itself is pretty much painless.  My mother's procedure was done with minimal sedation and was completed within 45 mintues to an hour.  She had a small incision at her hairline on her left temple.  It healed without a trace within a couple of weeks.

My understanding is that if "giant cells" aren't seen, it does NOT definitively mean that a person doesn't have arteritis. But if there are a significant number of "giant cells", they can be pretty sure a person does have it. So the negative result isn't always "a clean bill of health".

I've included a video that shows a biopsy being performed. It has some technical information that may or may not be of interest, but if you would like to see how the procedure is performed, it should be worth watching.

A Biopsy for the Diagnosis of Temporal Arteritis

Temporal Arteritis Intervention

The only treatment that I found mentioned in any of the literature I reviewed or which was mentioned by the three physicians we encountered, was that of Prednisone to reduce the inflammation. With reduced inflammation, normal blood flow is possible.

I don't know the rate of success, but it seems to be universally accepted that if the appropriate dosage is given, the problem can be controlled. I know in my mother's case, the dosage has been kept low based on her osteoporosis and the risk of further bone damage due to the treatment. Apparently, patients have to be slowly "weaned" off of the Prednisone, as stopping it abruptly can cause serious, even life threatening problems. It may be necessary to take it for a year or even two.

It's frustrating, but it appears that the treatment for temporal arteritis (Prednisone) may be harmful in a number of instances. However, the risks that exist if the arteritis is left untreated are too great to avoid the treatment. However, you can learn more about the potential side effects of Prednisone on the About.com site.

Other Important Information Regarding Giant Cell/Temporal Arteritis

Mayo Clinic
Learn more about symptoms, risk factors, and more.

Wikipedia
General information about this condition.

Giant Cell Arteritis Questions and Answers

Updated: 11/14/2011, mulberry
 
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