This week in our Giant Cell Arteritis (GCA) awareness campaign, I Wish I’d Known, we’re talking about the difficulties people face when managing a diagnosis. What the impact can be on every aspect of a person’s life, and how we can help.
A diagnosis of GCA affects everyone differently, but many people tell us they feel overwhelmed at first.
One day you’re trying to understand why you have headaches, jaw pain, fatigue or changes to your vision. The next you’re being told you have a serious condition, starting high-dose Prednisolone immediately, and hearing medical terms you’ve never encountered before.
Even after the initial shock passes, living with GCA isn’t straightforward. You may be coping with ongoing symptoms, attending regular appointments, adjusting to medication, worrying about relapse, or managing the side effects of long-term steroid treatment. Family and friends may not fully understand, because outwardly you “look fine”.
If any of this sounds familiar, you’re not alone.
The emotional impact is real
Living with GCA isn’t just physically demanding; it can affect every part of life. Many people feel anxious about their diagnosis or future health. They may fear losing their sight or having a relapse. It can also be frustrating not knowing which symptoms are caused by GCA and which by the steroids used to treat it. Changes in mood or confidence, loneliness, and uncertainty about what is “normal” are also common.
Many people describe GCA as life changing. Ongoing symptoms, treatment side effects and uncertainty can affect relationships, hobbies, work, independence and wellbeing. Patients consistently want better information, reassurance and connection with others who understand.
Prednisolone can be difficult too
Prednisolone is a vital treatment that protects against serious complications such as sight loss. But taking steroids for months or years isn’t easy, and many people experience weight gain or changes in appearance, poor sleep, mood swings, fatigue, muscle weakness, bruising, or worries about osteoporosis.
Sometimes it’s hard to know whether you’re feeling unwell because of GCA, because of Prednisolone, or because of something else entirely.
Support can make a real difference
Connecting with people who understand what you’re experiencing can be incredibly reassuring. As the UK’s patient-focused charity for polymyalgia rheumatica (PMR) and GCA, we’re here to help you feel informed, supported and connected whether you were diagnosed yesterday or years ago.
We offer:
- Reliable information you can trust to help you understand GCA, treatment and living well with the condition
- A helpline, where trained volunteers who understand PMR and GCA are ready to talk
- An online support forum to share experiences, ask questions and learn from others
- Local and online support groups offering friendly, welcoming communities
Become a member
Many people also choose to become a member of PMRGCAuk. For a small annual subscription, membership keeps you informed and connected through our members’ magazine and exclusive webinars with leading experts. (Our recent annual members’ day provided in-depth information on Staying Well while Reducing Steroid Treatment for PMR and GCA. It focused on steroid withdrawal, adrenal suppression and adrenal crisis and is regarded as our best webinar yet. New members can request a recording of the webinar.)
Membership helps us support everyone affected by PMR and GCA. By joining, you become part of a community that understands these conditions and is working towards better care, better research and better support for all.
Whether you need information, reassurance, someone who understands, or simply a place where people “get it” – we’re here to help.
GCA I Wish I’d Known campaign
See the first post in this campaign: New or Unusual Head Sensations? It Could Be Giant Cell Arteritis
