Lupus real lives
As a child I’d been frequently unwell — particularly prone to bacterial and other infections, especially if I pushed myself too hard. In August 2005 I was a bit sore in the shoulder joints one evening. It was an odd burning sensation. The next morning I couldn’t move, and my hands hands were so swollen that I couldn’t close my fingers. I had the lupus eye-mask rash, but most worryingly, I couldn’t think about what to do to help myself.
I was lucky that a friend called and took me to get medical help.
It took nearly 18 months to get a diagnosis of SLE with central nervous system involvement, with Sjögren’s syndrome and Raynaud’s phenomenon.
In 2005 I was given Prednisone which was effective, but it was only for a fortnight and my symptoms kept coming and going. After diagnosis in early 2007 I went on to Plaquenil, which improved things, but over time my dependence on immunosuppressant drugs has increased. This has affected the level of side effects including osteoporosis.
I currently move in and out of cycles of relapse and recovery. In 13 years I have only had two periods of clear remission of a few months each — both when I had breast cancer. It’s exhausting and overwhelming a lot of the time.
Garvan’s Professor Chris Goodnow has done amazing work in immunology and as our understanding of the mechanisms of immunity increases, we'll be better able to see where things go wrong and how to remedy them. The problem with autoimmune disease is that the constant attacks on the organs will cause irreparable damage over time, so the earlier one diagnoses and deals with the peaks of inflammation the better.
I think genomics research offers exactly that kind of insight.
[* Name changed]
In 2015 I went to have a hernia operation, and I had one and then several more blood tests. At around the same time I was swimming and I had back pain and also in my arm, and felt a bit strange. I couldn't lift my arm up high. And then my surgeon said I have lupus.
An x-ray showed there was nothing wrong with my shoulder, so I went to see a specialist. He examined and put me on a regime of Prednisone. The doctors said I might have polymyalgia rheumatica. But the tests showed I had antibodies for lupus.
An earlier ultrasound of my heart was clear. Kidney and the liver function showed nothing. Bone density tests were good.
There's no major history of autoimmune diseases in my family, but my sister used to get frequent blood transfusions — I never knew what for. My mother was diabetic. I'm 78 now and had no problems with my health.
I started on a high dosage of cortisone, and I noticed an immediate effect; I could lift my arm, the pain was no longer there. I've slowly reduced the amount of cortisone, down to one milligram, and then stopped. The body gets used to cortisone.
I go swimming 3 or 4 times a week for half an hour — but I still get sore. Sometimes I get a sharp pain like a cold needle, sometimes it's a dull pain which is like a warm pain. When I wake up in the morning I have some pain, but then I walk to the pool, swim for half an hour and walk back again; in the afternoon the pain doesn't exist any more.
Right now I'm pain free, but all of a sudden I'll have it. I prefer to deal with the pain and manage it, because I don't want to go back on the cortisone.
I've put the Garvan Institute in my will; and I'd be happy to support any program that will help to discover if not a cure than at least a treatment that controls the condition.