Bobbie Hunter
I have had Giant Cell Arteritis for 9 years. This disease totally disrupted my life initially with severe headaches, a painful scalp, night sweats, loss of appetite and extreme fatigue. I went from someone who walked 10 000 steps a day to a person who needed a lengthy daily sleep and muscle pain when standing and walking. Early in the treatment with high dose steroids my achilles tendons ruptured and this caused additional problems with my balance. From being an active person, I became someone who was unable to do much physically including daily household tasks.
The risk of going blind and/or having a stroke required ongoing and prolonged treatment with prednisone with differing levels of dosage (at times up to 80mg). Both the levels and long period of being on prednisone has meant that I have encountered multiple side effects from this medicine. These include Cushing’s disease, sleep disruption, steroid induced diabetes, bone density loss including a spontaneous knee fracture, high blood pressure, a change in my eyesight, ruptured achilles tendons, severely weakened immune system and adrenal insufficiency.
Last year I spent six days in intensive care, and another week at Auckland Hospital with pneumonia caused by parahuman influenza. For four days my family were told that I was not expected to live because my severely weakened immune system could not fight the viral infection. This was directly attributed to being on steroids over a long period of time and its destruction of my immune system.
This has made me very wary of going anywhere because of the risk of getting an infection and has curbed my social life and affected my well-being negatively.
Tocilizumab is a biologic drug used internationally in the treatment of GCA, having had clinical trials and real-life studies which have proved its efficacy and safety. Tocilizumab is described by my rheumatologist as the gold standard treatment for GCA. Tocilizumab is a recombinant humanized anti–human monoclonal antibody directed against soluble and membrane‐bound interleukin‐6 receptors of the immunoglobulin IgG1 subclass. Interleukin‐6 has been shown to be involved in the pathophysiology of GCA. Tocilizumab targets the IL‐6 receptor and so it has been studied and used widely internationally as a steroid‐sparing agent for subcutaneous use in GCA.
In New Zealand the only funded steroid sparers are DMARDS (methotrexate, mycophenolate and leflunomide). I have been prescribed these DMARDS over my nine-year journey with GCA but they have not successfully allowed me to taper completely from steroids. These three DMARDS despite well done clinical trials have shown no certain efficacy and data suggesting benefits for GCA patients comes from small trials, anecdotes and clinical experience. These DMARDS are funded by Pharmac and therefore available as the only funded options rheumatologists in New Zealand have available.
International research shows that people with GCA who have an injection of tocilizumab every week have an improved chance of being steroid and symptom‐free after a year. Research has also shown that patients with GCA who received tocilizumab had fewer infectious complications than those on a glucocorticoid-only regime. Overseas, tocilizumab has been at the forefront of treatment prescribed when individuals are first diagnosed with GCA and are at high risk of glucocorticoid-related adverse events. Hypertension was the most common risk factor identified but age and other co-morbidities, such as osteoporosis or prior cardiovascular disease, are also compelling reasons. Given that GCA occurs in individuals older than 60 arguably everyone would benefit from immediate access to tocilizumab. Certainly, for me access to tocilizumab could have prevented years on steroids and the damage they wrought.
Tocilizumab (Actemra) is on the Pharmac Tracker and has been on it since 2023. The committee reviewing the application in 2023 placed it within the bracket of Seeking Clinical Advice. The committee did not meet again until 2026 and it is now in the tracker Under Assessment.
The lack of access to tocilizumab has sentenced me to a life on steroids with all its incumbent side effects.
