I finally saw the rheumatologist on Monday (5 month wait! and had to travel to another hospital in the trust to see him!).
I had been on Methotrexate injection but stopped 2 weeks ago as I had a few mishaps with the self jabs and just didn't want to take it anymore also due to the nausea, I carried on with the Plaquenil. He agreed that he wouldnt want to take it if it made him unwell. I wanted to stop all meds for various reasons one of which is the constant fight to get appointments and that in itself can cause things to get worse. Anyway he doesnt want me to stop and has changed me onto Avara(leflunomide) and gave me a steroid injection to calm things down again and buy a bit of time. BUT i can't find anywhere that this drug is used for vasculitis and in fact I found a couple of instances where it has caused vasculitis!!!! He then said I don't want to see you here, it's too far to come and I want to see you in 3 months in the lupus clinic at my usual hospital, but I have no control over that.
I'm fed up and still want to stop and get off the roundabout. My rellies and friends keep saying get yourself refered to another hospital but is the devil you know better than the one you don't?