Isabel has giant cell arteritis (GCA), a type of systemic vasculitis. She is delighted with the care she has received.
In Autumn 2018, Isabel wondered what had happened. Out of the blue, she was sore all over and her husband had to help her out of bed. She got a same-day GP appointment where a young doctor suspected a condition called polymyalgia rheumatica. The senior GP agreed and prescribed steroids, which quickly got rid of the pain. He also arranged to see Isabel once a week for blood tests and monitoring.
By the fifth week, Isabel had headaches that were keeping her up all night. She says these were so painful she watched the clock to see when she could take the next paracetamol tablet. Because she had polymyalgia rheumatica and headaches, Isabel’s GP suspected that she had a type of vasculitis called giant cell arteritis (GCA). He made an urgent hospital referral; the appointment came so quickly that at first Isabel thought she must have been given a cancellation.
The consultant rheumatologist did an ultrasound scan to check for inflammation in Isabel’s arteries and confirm the diagnosis. Isabel says that her consultant really wanted her to understand GCA. She explained everything clearly, gave Isabel leaflets to read about the medication, and encouraged her to join a support group. Isabel feels this care was important because, once GCA is under control, it would be easy to think you don’t actually need the pills.
The consultant started Isabel on high dose steroids (prednisolone) and gave her a plan to reduce these over time. She prescribed an additional medication called methotrexate to help reduce the dose of steroids. It took a few months for the headaches to go, but Isabel says that – apart from an occasional feelin in her temples and less energy than she would like – she has been well since.
Isabel says she is delighted with the NHS and everything she has been given, as nothing has been left undone. At an early stage she was warned to go straight to her GP (or out of hours to accident and emergency) if she had changes in her vision, headache or jaw pain. Her GP, optician and consultant all see her quickly when necessary; for example, when she experienced visual distortion her consultant did further ultrasound scans. Isabel finds this reassuring as her own mother suddenly went blind in one eye.
Isabel can phone the rheumatology nurses directly when needed. She once phoned a charity support line and found it helpful to talk to someone who understood how she was feeling. Her last hospital appointment in December 2020 was in a nurse-led clinic and she is due to see the consultant in July 2021. Isabel is planning to ask if it is likely she will come off the steroids and methotrexate and if she will continue to be monitored.
Isabel says she doesn’t dwell on her illness and could nearly forget about it if she didn’t have to take pills every day. She is looking forward to going on a cruise with her cousin when the COVID-19 pandemic is over.