I was diagnosed with GCA in October 2017 and have been on high doses of pred since then including 8 weeks on 100mg daily. I am now down to 40mg daily with no problems reducing. My main symptom is arm pain due to claudication (due to 'arterial wall thickening with luminal narrowing and occlusion of subclavain and axiliary vessels'. I was also started on cyclophosamide in January.
In that time I have had no reduction in arm pain (although no bad side effects or worsening either and no eye symptoms). I have now had 3 specialists (a vascular surgeon, my Rheumy and my ophthalmologist tell me this pain might be permanent due to scaring.
This is starting to feel scary as it is impacting significantly on my enjoyment of life and I wonder about the value of taking these drugs ( I may start Tozilizumabub in April if still no improvement).
Has anyone else found themselves in this position and what was this outcome? Is there still a chance after all this time that things could improve. Its all starting to feel a bit hopeless.
I find this forum a great resource and support. Thank you.