GCA and appointment with Das Gupta

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.

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  • I do wish there were a decent computer system for the NHS. My rheumatologist asked me to phone her secretary with the date for my CT scan as the computer system does not update it. My GP is unable to view any Xrays. Our local hospital has been put into special needs or whatever they call it and another hospital has taken over, but they have a separate computer system so the level of communications is zilch. My surgery uses faxes to communicate with the local chemist. The NHS computer system or lack of it is still in the twentieth century.

  • 20th????? As recent as that?????

  • 17 mg to 7 in three weeks?! Gosh, Christine, that seems like a big drop in such a short period. I would be worried too.

  • It will be very uncomfortable but not dangerous - going to zero would be though. There is a lady on the patient.info forum who has recently had to do the same and she said it wasn't as bad as she expected.

    Unfortunately PET scans are adversely affected by us being on much pred, apparently even 5mg will make some difference.

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