Long post alert.
This is my first foray on this site so let me give you a little background.
I was diagnosed with Sjogrens Syndrome just after my first child, in 2008. My symptoms slowly got worse and I deteriorated in health. After a long time with little help from my Rhumy at that time (who made me feel I was on a Ro Ro ferry), i was finally passed to a different consultant (who has now left!), but only because there were issues with staffing! We went thrpugh all my symptoms and my blood work and she thought I had Lupus and sent me for a battery of tests, including a Lung Function test. The last one was 3 years previously and had come back fine. I'd said I i was feeling generally worse with off and on tightness in my chest and a cough, so she was covering all bases. The test came back saying I wasn't absorbing enough oxygen so was sent for a CT scan. That came back with nodules and possible Bronchiestasis about 6 months ago.
I was then sent to see a Respiratory consultant. We went through symptoms e.g. breathless (I just though I was unfit), productive cough, malingering chest infections etc... She said she thought the Bronchiestasis was linked to my Sjogrens/Lupus, she gave me a leaflet and we talked about what to do if I thought I had a chest infection- all in all a positive experience. She also said she'd write to my Rhumy.
I then got another new Rhumy and we started all over again, symptoms and blood work. I must point out i requested a different Rhumy, as I wouldn't got back to the one (who had made me feel I was on a Ro Ro ferry) and the other had left. He, then diagnosed Lupus no possibly or it's and buts.... which was probably a month ago. I wasn't as shocked as I thought I'd be, as I'd had a heads up that it probably was, so I did some research.
I'm currently on Hydroxychloroquine and on and off tapering Prednisone. My last Rhumy mentioned probably putting me on Methotrexate, after speaking with Respiratory Medicine. He was however cagey about what it was and why he needed to speak to Respiratory Medicine.
So, I have another nurse appointment in Sept, a Lung Function test next week and now a request to book an appointment for Respiratory Medicine, which I'm not sure why. Is it for the Methotrexate or just a follow up? I'm not complaining but that's a lot of appointments - makes one wonder if there's a concern somewhere.... especially after I've had a mixed experience over the last 7 years....!