Hi, I am after some advice. I was diagnosed with sle January 2012 after years of joint pain, rash and fatigue. I was prescribed hydroxychloroquine 400mg daily. It made no difference so I was prescribed methotrexate 17.5mg. Again it made no difference. Over the summer things were pretty bad so I was also prescribed steroids, again no difference.
What I don't understand is that I have only ever had a positive DS DNa, not positive ana and all other bloods normal. When I went to see rheumy nurse in September for tests all of my bloods were completely normal but I still felt rubbish. Due to this I took myself off all drugs without discussing with rheumy or gp's as I knew they would disagree.
I have been off everything since September and feel exactly the same, I just don't understand and I am worried about seeing consultant in two weeks time as they were not informed. I wonder if I even have lupus due to bloods and meds not seeming to show anything. When I suggested that to rheumy nurse she said I have it and need to accept it but I just don't feel convinced and don't want to pump my body with drugs that seem to make no difference. I feel rubbish most days regardless.
Thank you for taking the time to read this