GCA and Tozicilimab

Just come back from a long appointment with Professor Das Gupta in Southend. Had a temporal artery scan and a scan of my sub clavian arteries, under my armpits - a very painful scan as arm right above head and arteries are very tender to the pressure. It showed I have stenosis caused by the steroids so I must find a way to come off them, It is a thinning of the arteries I think. It makes me a good candidate for the Tozicilmab - not sure if I am spelling that correctly. I have been reasonably well for over a week and have been on Mycophenalate at 2 gms a day. So I have to try that for another two months and if it doesn't work I can try the new drug. I have had a miserable time for over a year feeling really ill with almost permanent flare ups if I even go down 1 mg so at least I feel it was a useful appointment and a way forward. Am on 13 mg now having started at 60mg and was on that dose for nearly two months. I was certainly given time and attention - over an hour and a half. Tiring day as 2 hrs from Lewes but I felt it was worth it. Had a sandwich on the beach after, which was bliss after so many days stuck indoors. Well - hey ho - onwards and upwards!!

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  • Very interesting. Please keep us up to date on your progress. Hope you are feeling better soon, tocilizumab or not. :)

  • So hard isn't it to keep trying to reduce , even the DSNS, on 1 mg a month and it doesn't work and you constantly have flare ups. Looks like you got the care and attention that you needed at this appointment so hopefully things may start to be on the up. Let us know how you get on. X Jackie

  • A couple of our members took part in the TCZ trial. Whilst we still do not know what they were given during the trial, we do know that their GCA went into remission within one year and they are still in remission.

    However it is so expensive that when it is approved for the use in GCA (probably with limited pred) it will most certainly be reserved for difficult, intractable cases.

    There is hope and I look back to 2007 and am amazed at how we have managed to raise awareness and how much more research into GCA and PMR is being undertaken.

    We owe 25 people and 1 medical person quite a lot who met in London March 2008 and the result is 3 Charities and support groups and progress.

  • Yes, I am grateful to everyone who has helped with this awful illness. Will have to wait to see how the Mycophenalate works. If it doesnt I will be having TCZ.

  • Stenosis is narrowing of the lumen of the artery rather than thinning (says she being picky) but apparently it happens in certain arteries due to GCA and persists even after steroid treatment.

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