First of all apologies for the delay in getting back with my update.
Quick back history - I'm a lupus patient in Leeds. Been so for about 3 years. Gone on about 3 trials and Tried a handful of drugs. Last trial had my last infusion presummer and we assumed if hadn't worked. 6 month review with rheumy and I saw an incompetent rude Dr who told me blatantly (as the handful f drugs hadn't worked) I didn't have lupus, gave me a leaflet on fybro, said it was up to me whether I continued on hydroxy or not, and left. While the nurse sat open mouthed at his behaviour and 'suggestions' ie: if you're tired stop drinking coffee - I'm fatigued and haven't had caffeine for 20yrs etc!!
Anyhoo, move onto my fury 're the appointment, threat to complain, knowledge that nurse has already escalated it of concern, and you guys' advice. I was swiftly given an appnt with the big rheumy boss.
He sat looking rather uncomfortable, waffles loads but said in a nutshell that I absolutely do have lupus. He couldn't really explain his colleague's behaviour but he didn't appear surprised so perhaps wasn't the first time he's had so sort out a situation such as this. I explained, as I had previously, that I have actually felt lots better since just before my last appointment. Boss guy believes the infusions are working (Can take up to 6 months to kick in) so fingers crossed and will monitor situation.
So I now DO have lupus and latest drug DOES seem to be working. There's good and bad guys out there, we seem to get the whole range don't we 🙄.