I have just found this forum and am so pleased to be able to read of others experience with this problem.
I was diagnosed by my GP in June 2014. It was a routine check up and I just mentioned that I had some stiffness in my legs and arms. It wasn't anything too serious, I had put it down to olld age (Iam 72). A blood test seemed to confirm his diagnosis. He put me on a dose of 20mg of Cortancyl (pred). Perhaps I should say that I live in France. It seems, looking at the forum that the start off dose in the UK is 15mg. I felt an immediate improvement and was able to continue with life as normal being pretty active for my age.
I was referred to a rheumy who I continued to see from July to March this year. Somewhat surprisingly, I thought, she was the only rheumy in our "county" town. Anyway I found her very difficult to communicate with and had no rapport with her. It seemed that she doubted the diagnosis as I she was able to manipulate my legs and arms with no discomfort on my part. Anyway I continued to see her and to reduce my dose regularly. It is at this point that I wish that I had had the foresight to keep a diary of times and dosages.
We were away, in Spain, for January and February and I think at that time I was on a dose of 12 and a 1/2 mg. I felt well and did a lot of walking.
On my return I was told, by a friend, of a rheumy in a town some 30 miles away with a very good reputation, so I decided to change.
I had my last appoiingment with my first rheumy in March and was reduced to a 10mg dose.
I now have the details of the doseage reduction, from the second rheumy, which I feel may be too fast.
On the 23rd April he prescribed a dose of 10mg (7mg am and 3mg evening) for 10 days.
Then 8mg (5 and 3) for 20 days.
On the 22nd May 7mg (4 and 3) for 4 weeks
Then 6mg (3 and 3) for 4 weeks.
Since early May I have had a lot of pain in my right thigh but not any major muscular pain in the other thigh, arms or shoulders. During the last few weeks this has become a problem and if I do any walking it becomes extremely painful the next day after which it calms down again. I mentioned this to my rheumy who gave a (Gallic) shrug and suggested I take paracetamol when necessary.
Is it normal for the doses to be split up like this?
Today is the day that I should reduce my dose to 6mg but I have decided to stay on the 7mg dose until I see him next. Any thoughts on this?
sorry if this is too long a post please bear with me!