My 86-year-old mum was diagnosed with PMRGCA a few months back and was immediately placed on 40mg prednisolone, which almost immediately stopped the pains.
She has been gradually reducing, but five weeks she was taken to hospital with a suspected mild heart attack, and discharged after ten days, with the cardiologist believing she had not had a heart attack but an infection which affected her heart.
Her behaviour began to change from that point, beginning with mood swings, personality change, depression.
In the last ten days, it is as if she has mentally fallen off a cliff, becoming confused, angry, frustrated unable to get her thoughts in order and to express herself.
She is now in hospital undergoing tests for dementia and other potential causes.
She has had two significantly lucid periods since she went into hopsital, when she was just like her old self, and those two periods both came after the nurses forgot to administer her pred.
My brother and myself, having researched it, are convinced she has steroid dementia.
The doctors have agreed to try to reduce her dose more quickly, but are sceptical that pred is the cause, as they say she would have begun to experience these symptoms when she was on 40mg, rather than after it had been reduced to 17.5mg
I have read that steroid dementia can begin at any time during the therapy - does anyone have any experience which could help us?