I am male, 69y young, and diagnosed with GCA in Aug 2011. Pre-diagnosis I only had a dull non- debilitating head ache, and slightly itchy scalp. After 3 visits to 3 GP's, and one visit to A&E ( after having 2 quick blinding flashes in the right eye), was told to get my eye sight re-checked, and take pain killers. It was only after 10 weeks that I had 2 small swellings adjacent to the right ear that my GP referred to me to Bristol Eye Hospital. I was immediately given 60mg pred/day, and a biopsy 3 days latter confirmed GCA. On high dose, the only affects I had were not requiring more than 4 hours sleep a night, and no aches and pains, ( important for golfers). All positive side affects. I have had 4 relapses, first at 1mg (damn), then 4 mg followed by 7mg and the last 2 months ago on 10mg. My reductions from 20mg/d were 15mg for a month, 10mg for a month, and then reduce by 1mgpd/pm. I have lived in Brazil since April this year, and my condition is treated by a 45 yo vascular specialist, who has only ever seen one case of GCA. I have come to the conclusion that previously, the pred reduction was too rapid. I get my blood markers checked monthly ( esr and crp), although this specialist says the esr is the important marker, since it shows inflammation, and crp shows infection?? I am now on 20mg pred/day, and every month will reduce by 2mg/day 'til I reach 10mg, and then reduce by 10%pd/pm. In effect, when it comes down to 1/2mg doses, I will take for eg., 8 one day, and 9 then next, etc, etc,. A negative side affect is my skin, especially the back of my hands, and forearms, and occasionally the face. Purple blotches, and skin that is easily damaged. I am constantly wearing plasters. lol.
If anyone has any further thoughts on pred reduction, and/or blotches on skin, would appreciate their comments. GL to all sufferers.