I was hit by GCA just under two years ago. The symptoms were strong headaches and then pain and tenderness plus swelling under my jaw. I went to the doctors thinking I was one of those rare cases to have a second - later in life - bout of mumps.The problem was diagnosed as a viral infection. The pain got a lot worse, so much so that I had to get up in the night, wrap myself in a blanket - it was February 2012 - and walk continuously from the hall to the dining room, then to the lounge and back to the hall doing this loop continuously for two to three hours at a time. I looked so dreadful after one particular night that my wife called the NHS advisory service as she thought from the appearance of my face, particularly my eyes ( a very drooped right eye socket) that I might have had a stroke. The call was referred to a mobile medic who decided it was best for me to go to hospital. At the hospital the diagnosis was again a viral infection. It was not until a few days later when I forced myself to do a short walk along a footpath that suddenly I got complete double vision. I could not tell which footpath was real. Fortunately my wife was driving our car and after I had rested took me home. There were two following incidents of double vision and I decided to keep a doctors appointment that previously I had had a mind to cancel. My doctor asked me to take a blood test and said it might possibly be Temporal Arteritis (GCA is the other name). He said he would phone the next day if there was a problem. He phoned the next morning and asked if my wife could drive to the nearby town and pick up a prescription. I was to start taking the tablets immediately. This was my start on Prednisolone at a high dose level.
Before GCA hit me I was a reasonably fit 69 year old who enjoyed doing a lot of walking. I was very happy to walk distances of about 12 miles on steep terrain and even managed 18 miles one day on the Wales Coastal path; it was all ups and downs. My first walk after treatment had commenced was to our village hairdressers, about a twelve minute walk on fairly level ground. I had to phone my wife to take me back home as I could not manage the short fairly level walk back home.
There is a lot more to tell but I truly wish I had come across Kate Gilbert's book "Polymyalgia Rhumatica and Giant Cell Arteritis a survival guide" a lot earlier. It is so very helpful and has given me a perspective on how I am progressing. I am down to 6mg of Prednisolone now and hope to drop to 5mg shortly. If you have not read the book I recommend very strongly that you do so.
I would be willing to give much more detail than contained in the outline above if it would be helpful to others with GCA. One more thing before I go. I have recently gone on a wheat free diet at the suggestion of my doctor. It appears from recent medical research that wheat in the diet can act to prolong a condition of inflammation. I am just into the experiment which so far has been going for two months. I do my own wheat-free baking and I enjoy experimenting to produce food that is better than shop bought wheat-free food. It is also significantly cheaper. Of course there is nothing scientific in my observations but I have noticed a definite improvement, so much so that I am keen to continue with the experiment.
If there is sufficient interest I will write more to share my experience, including about my decision to go on a 5+2 diet. I was gaining weight and was becoming significantly over weight. I have lost a couple of stone in weight and really feel the benefit of it. The decision was reinforced when later I learnt that my sister who is 18 months older and a bit overweight had suffered a stroke. I told my doctor after I had started the 5+2 diet and he approved my action - thought it was a good idea.
I must stop now and wait to see what response I get. I don't want to bore any details of my personal experience with GCA. But perhaps there is some virtue in GCA sufferers sharing their experiences and especially if they have discovered any measures that are helpful.