Travelled two hours to Southend to see Professor Das Gupta. Although I had reminded my rheumys secretary to send all my scans and notes weeks ago to him nothing had arrived. Luckily I had taken some of my notes with me. Both he and his registrar were marvellous and I was with them nearly three hours. Took an ultrasound scan and it seems my arteries are not as thickened as they would expect so it is possible I might have been misdiagnosed (was from a PET scan and two rheumatologists diagnosed GCA independently). It was mentioned that I might have Castlemans lymphoma or lupus. Sent for lots of blood tests. Have been told to reduce steroids from 17mg to 7 in three weeks so I can have another PET scan. Difficult because I am really ill with every 1 mg reduction. Am now feeling very worried but glad I now feel in good hands. After 11 months I might have some action. If it is GCA I might be able to have tosicilibub. I would have to trial another NHS drug first for three months. Felt exhausted by the time I got back home.