Hi all, finally seen in rheumatology clinic yesterday but no further forward..
The consultant there is well known for expertise in lupus so I was holding out hope for some answers or a greater understanding on my part, of what the future looks like. However was seen by registrar instead who ordered further blood work and sent me for chest x ray as I'm now on steroids for problems with my lungs. Additionally I have costocondritis (inflammation of tissue between ribs). This is all painful and there are further symptoms and consultants' views all pointing towards lupus/mixed connnective tissue disease, however where I'm really suffering is with joint pain. Naively I hoped yesterday would be the beginnings of a treatment plan.
On examining my joints, he told me he couldn't see or feel inflammation so he's reluctant to start me on hydroxy. Instead have 3 month course of more naproxen, which I'll start when I finish the prednisone.
I have a very high rheumatoid factor result, but negative for ANA. He said in his mind this made lupus or connective tissue disease very unlikely. This is different from what other consultants have said. I felt like crying when he said he couldn't identify inflammation in joints. If there is none, why am I in so much pain? He said sometimes a high RF result was a red herring and some people have it but no symptoms. However I do have symptoms! Just none that he can feel with a cursory examintion. So frustrating.
The further blood tests are for additional markers of inflammation so we'll see what that brings.
Has anyone here had a lupus diagnosis with a negative ANA result but a positive RF?