Kia ora (Hello), my name is Di and I live in Nelson, New Zealand.
I was diagnosed with PMG in 2015 and 3 months ago with atypical GCA. This manifests as blockages in my subclavian arteries so I get significant claudication pain in both arms. Worked up from 60 to 100mg pred and was on that for 8 weeks with no improvement but also no deterioration. Now reducing.
How I wish I had had Kate's book when I was diagnosed with PMG as I had no idea about GCA. In April this year I developed jaw pain and realised it might be GCA and went to Emergency department. Then in July I couldn't feel any pulses in my wrists and returned once again saying I thought I had GCA but this was denied both times.
Since then I have learned to trust myself and taken control of my care and condition.
I finally got a diagnosis on biopsy in December so at least know what I am dealing with.
I am now on 60mg prednisone and also cyclophosphamide with a view to getting TZB as it is a requirement here in NZ to have tried these things first. I am a little reluctant given the side effects and toxicity but at $20,000 a year to pay myself feel I have no choice. I am also getting a second opinion so I have another perspective.
Kate's book has been life changing. I feel validated and hopeful with great new ideas.
The photo is with my grand-daughter Imogen Diana now 17 months old and living next door to me with my daughter Megan. Such a joy they are.