I was diagnosed a couple of months ago. In Nov 2018 I had bloods which showed my CTD screen at 1.6 and dsDNA at 14. These are the bloods that diagnosed my lupus. It just took some time from then until my appointment to get the results. I was sent away with hydroxy but that got changed to steroids and to have the bloods done again. This was in August 2019.
I have chased and chased the results even speaking to my rheumy who told me they didn’t have them in front of them but would write to me. They wrote to me to tell me that my vit D was low and that was it.(as an aside, my GP had already let me know that it was low and I had started supplements)
Having heard no more and feeling like I was getting nowhere with what my full blood test results were, I realised I could probably get them from my Gp. Well!! The new bloods show my ANA at 2.9 and dsDNA now 54. There’s a note on there saying ‘communicate patient: needs follow up. Standard doses of azathioprine/ 6-mercaptopurine are appropriate. ‘
We are now October. I feel fobbed off and let down. I have had to chase all this up AND arrange an appointment with the hospital so I can go back sooner rather than later. The only ones who have been helpful are my GP surgery. As someone newly diagnosed and scared I don’t feel hopeful that I will be kept well. Please tell me this isn’t the norm!