I read with interest a lot of the posts but I still don't know if I have GCA or not. My 1st visit to GP, end of Sep 2016 - she suspected GCA and started me on 40mg preds then up to 50mg after 4 days. My blood tests have all been 'normal'. My visit to rheumy was at about 5 weeks and he didn't think it was GCA. but a sinus infection!! Biopsy was negative at 7 weeks.
Decreasing of preds started - 5mg per week down to 20mg, 2.5mg per week down to 10mg and then 1mg per month.
All went well and I'm thinking it's not GCA, until I was down to 7mg and planning an overseas holiday, saw the rheumy and agreed to stay on the 7mg for 2 months to cover the trip.
The day before we were to fly out I woke with the return of face pain, the sensitive creepy crawly feeling on the scalp around to behind the right ear, an ache across the bridge of the nose and also in the upper jaw/gum.
Rang the rheumy but he was not available, went to GP and she gave me a script for 25mg preds again and sent me for another blood test. Said for me to ring her the next day and she would advise if I was to go up to the higher dosage. I tried twice but didn't get onto her. So when I got to England 23hr later I still had the same pain, no better or no worse.
I decided in the absence of Dr advise I would go up to 25mg for a week, that worked, took all the pain etc away and I was fine for the whole trip, had reduced down to 10mg by the time I was heading back home. On the plane I realised the same pains and feelings were back again. In Sydney for a couple of days before the 7hr drive home in the country, I went back up to 25mg, 1.5hrs later pain free.
By the time I had reduced down to 15mg again I had a few nigglely feelings, not really pain, so when it came time to reduce to 12.5mg I did thinking "its not supposed to be GCA" by that afternoon I had the burning pain in the temple area, worse than ever, after a very poor night I took 25mg again and went to see the GP, I said to her "I think you were right the first time" her reply was "but the rheumy doesn't think it is". She told me to stay on 25mg until I had my next rheumy appointment in 2 weeks.
When I saw him he offered another biopsy to help rule it out. I said no. As I was still having aches and facial feelings as before when I saw him he said as a test go up to 40mg for a week then back down to 35. As it turned out I was coming down with a head cold which then went to the chest. At present I'm on 35mg and have slight pain so don't want to reduce to 30.
I have now been wondering am I doing too much. My reasoning has been 'if I don't have GCA I don't have to pace myself' and have been carrying on as before. Is it because of the preds that one needs to pace themselves or because of the underlying disease?
I work full time, we have been setting up a new office, moving furniture etc as well as having my elderly parents living at home with me.
Any insight would be most appreciated and sorry for the long saga but I felt it best to explain it all.