So a very long story short, after a disappointing Rheumy visit who after a total 4 minute consult suggested Mycophenloate I went to see my doctor, saying I was reluctant and asked him to take over my care.
He was concerned about my age as I am young (although many are on this forum) for this condition and it seem very resistant. So he suggested I try a another consultant, one he recommended, going Private for a one off appointment.
So I went along today, having had recent bloods taken, apparently showing ESR still elevated. I have reduced by .5 mg a month - still aching but as told by both gp and precious consultant, not to worry about aching.
Had first ever physical exam, where the consultant was shocked how tender I was, how little movement in my neck and shoulders and my scalp and temples were tender.
So she want me to go up to 9 or 10mgs of preds and want to put me on leflunomide or mycophenolate - she says the diagnosis of GCA seems correct but is unsure if I have inflammatory arthritis and/or PMR so the above meds may help on that level too.
Any idea which is better? I am feeling drawn towards leflunomide ........ also extremely disappointed as I got to 7.5 for 2 days
She was so much more approachable that the other consultant, has does do NHS clinics and has suggested my doctor contacts her direct and hopefully I mag get on her list.
Many thanks as always