Hi again,
I'm also sure you're not a hypochondriac and it makes me mad when doctors make patients think they are
I have tendon problems (weak tendons and calcification on tendons) which are definitely linked to my lupus as they affect me more when I'm flaring and when the disease is generally active. However, when I had a period of remission they disappeared as if by magic!
I also have frequent, almost daily headaches and have had an MRI, EEG etc. which don't indicate why. The neurologist is sure they are part of lupus and I'm sure she's right as when we manage to control the lupus, the headaches also disappear. Headaches are a real pain, especially if they are happening every day. It's awful when you get to the stage where you can no longer remember the feeling of not having a headache and even worse when you are stuggling to work with that every single day.
It seems that you are still feeling a lot of exhaustion etc. without necessarily being in a flare (as you say you are only on imuran etc. when in a major flare). I'm a little curious as to why your doc prefers having you on longterm prednisolone instead of having you on something like imuran which would probably better control the disease. I know my doc put me on imuran (in addition to plaquenil) in order to get me off prednisolone (I'm currently tapering and am now at 7.5mg).
I know that it may be geographically difficult but have you thought about maybe seeing someone else at some stage and/or seeing if it isn't maybe time to think about treating you differently. Even people who are delighted with their docs often say that after a while their treatment needs adapting and the doc regularly does that if need be.
It just sounds like you are really not getting adequate treatment to improve the quality of life and I'm sure that more can be done.
hugs to you :hug:
Katharine