I was diagnosed with SLE about 4 years ago now and since then I have been on 400mg Plaquenil, Folic Acid, Vit D, Calcium and Fluoxetine (for Raynauds). I managed to get an appointment last September with the Louise Coote Centre and saw Dr Sanna. I came away from there feeling I didnt reallly get anything from the appointment, and after having bloods taken there, he wrote to me and basically said that I have no active lupus, along with a load of other stuff he was basically as I read it saying I was fine!
I actually wrote back to him as I was confused by his comment of "no active Lupus" asking does this mean that I do not have Lupus at all or does it mean that the medication that I take keeps it at bay?
He also said that he would refer me back to my own rheumy but I have not heard anything from them either!
So I have now taken matters into my own hands (maybe rather stupidly but we will see) and I have stopped all of my medication!
It has now been 2 weeks and I am feeling fine, although I have a really itchy head and feeling tired in the afternoons, but not enough to make me want to sleep, and sores all over my back, although I am wondering if some of this is psychological as this was a big problem prior to my starting on Plaquenil.
I have the medication here still but I really dont want to take it as I want to, if necessary go back to the doctors and get a referral and re looked at in terms of diagnosis as I dont feel like the doctors think there is anything wrong with me!
I am struggling a little as I know how ill I have been in the past and I dont want this to affect my job but I really feel it is something I need to get cleared up! and the lack of a response from Dr Sanna has made this a difficult decision!
Keep your fingers crossed for me that I have done the right thing!!!!