In November of 1980, at the age of 30, my husband and I were busy with some home decorating. The project required me to keep my arms above my head for a few minutes at a time. When elevated, my left arm would ache and my hand would become cold, but the pain would be relieved by returning my arm to a resting position. About three weeks into the project, I said to my husband that it felt like my arm was not getting enough blood circulation. He felt for a pulse, but was not able to get one in my left wrist.

The next morning I went to my family doctor who sent me to see a vascular surgeon at the hospital emergency department. The surgeon said there was still circulation, although greatly reduced.

In January of 1981, I was scheduled for an angiogram which showed stenosis and collateral circulation in my left sub axillary artery. I was readmitted in March of 1981 and a balloon angioplasty of the affected area was performed. The procedure caused an aneurysm, still present today. Circulation improved and my hand became warmer. I had a follow up exam with the vascular surgeon the next month. My circulation was slightly worse than post angioplasty.

Everything seemed well for a couple of months and then similar symptoms started in my right arm...

The vascular surgeon sent me for another angiogram (stenosis and collateral circulation were present in a similar area on my right side) and an attempted angioplasty in July 1981. The angioplasty was unsuccessful due to technical difficulties. A final attempt was made in September 1981. Again the angioplasty was unsuccessful, but extensive films were taken of the arteries in most of my body. The fourth failed angioplasty made me very upset and I reacted badly to the contrast dye (headaches, nausea and vomiting which later turned out to be an allergy to the contrast medium). The vascular surgeon’s diagnosis was that my rib was pressing on my artery and I would need a rib resection.

I became friends with the X-ray technologist who was present for each of my angiography procedures. When I mentioned to her about the rib resection, she convinced me to come and talk to the radiologist about an alternate approach to performing the angioplasty. This was a ruse to get me to look at my films. I knew nothing about x-ray technology, but I immediately questioned why the rib, pointed out to me on the film, should be removed considering that the artery and the rib were not touching. The radiologist had already spoken to another vascular surgeon, who had coincidentally been in the x-ray department on the day of my first angiogram. The radiologist showed him my films and over the next 10 months, asked about me whenever he was in the department. He agreed to see me immediately for a second opinion.

This surgeon explained that he felt my problem was of a rheumatoid nature. After examining me to confirm his theory, he referred me, within a few days, to the Vasculitis Clinic in Toronto. Armed with my angiography films and blood work results and following a three hour case history interview and examination, the doctor announced that I had Takayasu’s Arteritis (TA), also known as Pulseless Disease, an autoimmune disease that causes inflammation of the large blood vessels. (The original doctor had dismissed the possibility of my having TA because I was only missing pulses in my arms. He said that TA patients have no pulses anywhere). The Vasculitis Clinic doctor ordered special coagulation testing which was performed through a specialist McMaster Medical Centre in Hamilton. He wanted to confirm there was no underlying coagulation problem causing my symptoms, before starting me on high doses of prednisone.

On Christmas Eve 1981, over a year after my symptoms began, I finally started my prednisone treatment. My dosage was tapered slowly over the next two years. I had checkups at the clinic every two months at first and finally every four months. In December 1983, I was tapered off prednisone. My checkups continued at the clinic twice a year and as usual, after being seen by the rotating rheumatology resident, the head of the clinic would join us for a final consultation.

For the next five years I remained inactive. I had returned to work as a Medical Laboratory Technologist in January 1982, when my daughters were 4 and 6 years old which enabled me to monitor my own blood tests. When my Erythrocyte Sedimentation Rate (ESR), a test to determine inflammation, started to climb in March of 1988, I had another angiogram. This time they checked out the right carotid artery. There had been bruits heard, upon examination, but no stenosis was apparent. As a precaution, I was started on a regiment of prednisone from May 1989 to September 1990.

In March of 1991 my doctor noticed bruits in my stomach. Another angiogram was performed and showed 70% to 80% blockage of the celiac artery. I was started on prednisone again. I was finally tapered to 10 mg, but stayed on this dosage until August 1993. Because of the numerous side effects of long term prednisone use, the doctor decided to start me on Methotrexate in August 1993. My prednisone was slowly tapered and I weaned off of it in November 1994.

I had two liver biopsies in January 1996 and August 2001, to check for fibrosis of the liver, a side effect of accumulative Methotrexate use, but both fortunately, were negative.

In September 2002, I had MRA’s (Magnetic Resonance Angiography). The results were excellent showing no arterial inflammation. My doctor at the Vasculitis Clinic decided to taper me off the Methotrexate. My TA has been inactive since starting on the Methotrexate (16 years) and since March 2003, I have been inactive without any TA medications.

I am retired and enjoying spending time with my three grandchildren. My husband and I enjoy photography and take photography workshops throughout Canada and the USA. If it were not for that one friend, who intervened on my behalf so many years ago, my story might have a different ending. I look forward to helping other people with their vasculitis journeys, as a member of the board of directors of the Vasculitis Foundation Canada.

Sharon