Am new to this site as I am in NZ & can only find info here. Came down with PMR aged 53, 2 years & 4 months ago. It took 9 months before doctors here took things seriously & prescribed pred. First doctor accused me of being an alcoholic, drug user or seriously depressed ( so off the mark, destroying any confidence) & despite the autoimmune conditions running in my family, refused blood tests. Eventually I found a doctor who did this, showing elevated inflammatory markers. Since then I have moved to a small country town & have a doctor from the USA who has worked with PMR patients. However, he doesn't allow pred. to be used for more than a year & it's already 1 1/2 years since my first dose. Right now I am on to 1mg every second day & should be totally off it by June. My fear is that it may flare up worse than it already is & even bring GCA into the picture. I have all the usual pain, stiffness & utter fatigue but need to get off the pred due to the terrible hunger pangs that will not abate otherwise. I no longer recognize my own body & feel like a leper in a society that has no support structures like the UK. People look at me as if I am lying or some kind of fraud. Can anyone tell me why a Rheumatologist controls things in the UK? That aspect of things never entered the picture here. Will this low dose, or no prednisone, bring on a worse scenario, eg GCA? I spent 9 months without medications so might just have to do it all over again...
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