My journey with GCA so far.

My journey with GCA began in December 2000 without knowing it yet. First alarming symptom was a short breakdown of vision in November, so short, one would not be able to be seen at an eye clinic, and it would probably be seen as a kind of fluke.

But my doctor got me an appointment at a general department at outpatients and two days before that my left eye went crazy, like someone had thrown grey-brown paint in my eye.

I went to the clinic and of course immediately referred to the eye clinic where I spent an afternoon with tests. The registrar mentioned some of the things I was tested for, and the last thing they would look at , would be GCA and a possible biopsy. She mentioned it was a nasty condition.

But they really had nothing to go on, I didn't have headaches, nor jaw claudication, only the eye.

Mid December I was diagnosed...provisionally.... as having NAAION, and put on low level aspirine. The specialist felt the arteries, but everything was soft and fine, not what seems to be expected. We did discuss GCA, but it seemed utterly unlikely. He offered me the biopsy, if I really wanted, but I thought that probably would be a waste of time and a bit scary too.

Well, the next thing that happened was totally new, stiff thighs and arms, and pain, starting not long before Xmas, it got rapidly worse, and I became almost like a cripple, and then early January, I finally found out what jaw claudication was.

I contacted the eye clinic, and they put me on 60mg prednisone straight away and booked a biopsy....turned out positive.

The prednisone has been a blessing in some ways. The stiff and painful thighs melted away the day I began the prednisone, that was such relief. The arms began to follow the next day. This indicates an associated condition called polymyalgia rheumatica, also treated with prednisone, but it has actually not even yet been diagnosed now. It has disappeared.

But the other side of the coin is the most horrible insomnia, and after a week of madness, I started on sleeping tablets.

There are other side effects but that is probably different for everyone. The dose had to be toned down to 40 mg and I nearly completed 4 weeks of it, and will slowly go down then.

I hope to be admitted to a worldwide research programme for a immuno suppressant especially developed for this condition. Will try anything, have nothing to lose.

I'm a professional classical musician and would like less of the brain fog, which is quite unbelievable, after taking the prednisone at 7 pm in the morning, the fog blanket descends in full two hours later, and only after the main meal at midday it starts to clear a little, but never completely does so. However, my music performance skills seem to have become absolutely wonderful, and concerts continue. This must be the euphoria people talk about. Creativity everywhere, that is also amazing. So it is not all bad.

The aim is, not to lose the other eye. I'm quite hopeful it can be controlled some way, am only scared at the lack of signs of a possible flare, in which case I have to up the prednisone. Have to look for further deterioration of left eye, perhaps jaw claudication. But that happened only twice anyway.

Like Sandy, I was a fit and healthy individual, keen gardener, plenty of exercise, very active at 73. No medicine, apart from supplements that I take for osteoporosis, that I do have, but treat naturally, with the best food possible. Have been on bisphosphonates for 3 years in the past. Don't really want that again.

Cheers from Christchurch, New Zealand.( would be great to correspond with you, Sandy, but wouldn't know how to bring that about)

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