Choice Blog

My experience: Giant Cell Arteritis

Retired community midwife Betty Short, 74, was diagnosed with GCA in 2014 and spent almost three years on steroids. She finally came off them last June, but was warned she might relapse at any time, and if that happened she would have to go back on steroids.

Betty, from Dunsford in Devon, was so frightened this might happen that she has been saving money out of her pension to enable her to pay for the new treatment privately if she had a relapse.

She says "My eyes are very important to me, particularly as I live on my own in a small village on the edge of Dartmoor. I need to see to drive so I can get around. But there;s no way I'm going on steroids. their side-effects hit you for six. My muscles got so weak I had to crawl upstairs on my hands and knees. I couldn't sleep and my face became puffy and swollen. I used to be able to take my dog on two-hour walks but now I struggle to manage a ten minute one."

Betty was doing voluntary work at a hospice in Exeter when she first experienced symptoms of GCA.

"I started having pain down the left side of my neck and across my shoulder. The pain was unusual so I went to see my GP, who put it down to old age."

A few weeks later she developed pain in her jaw and mouth, which got so severe she was unable to eat properly and lived on liquids. "I went to see my dentist, who referred me to the maxillofacial unit at the Royal Devon and Exeter Hospital. They told me I must have strained my jaw and gave me exercises to do."

Her mouth recovered and that September Betty went on holiday to Croatia, but on the second night there awoke with 'the worst headache ever'. "It was so bad I was banging my head against the wardrobe door, I put my fingers to my temples and the blood vessels felt raised. I took paracetamol but it didn't help."

The hotel called a doctor who prescribed antibiotics, which did nothing for her headache, and she spent the rest of the holiday in her room. Back home, her GP referred her to the Royal Devon where, despite her having ahead X-ray, no one could explain her headache.

"As a former midwife, I sensed something was drastically wrong," Betty saw another doctor at her GP practice who recognised her symptoms as GCA and put her on a high dose of steroids- eight 5mg tablets of prednisolone a day. Within 48 hours her headache had gone.

Although she is now off steroids, they have left her with stiff joints, depression and fatigue. To her immense relief, however, she still only has to wear glasses for reading and can continue driving.

"The news that I'll now be able to have tocilizumab on the NHS if I have a relapse is tremendous. Knowing there's an alternative to steroids gives me peace of mind, but, in case the policy changes, I'm continuing to put money away."