Just wanted to report about my scan, not to bore anyone but in case it might help someone else. So I had an ultrasound yesterday morning and 3 arteries were scanned, one of them had inflammation and was restricted when put under pressure. The lovely lady who did the scan was happy to show me everything on screen and explain it. In fact she said it was unusual to have anyone interested as people are often too scared to want to know and was delighted I was so interested.
This was quickly followed by a talk with the Rheumy who said he was sure it was stopping TCZ for my op was responsible for my flare,asked me how many injections of TCZ I had taken since restarting them. I had 2 of them and had increased from 4.5 Pred to 10 Pred and resumed injections. So it was agreed as I now have no symptoms I would go down to 7.5 Pred today for a month and then reduce to 5mg and go back to him in 6 weeks by which time I will have been on 5 for 2 weeks. (blood tests were normal of course because of TCZ)
He said I could stay on 5 for a while if I wished or they could add something else to help me taper as my TCZ year will be up in December. When I said how disappointed I was that the TCZ was coming to an end as it was obviously helping me he advised me that talks have been taking place to put pressure on NICE to allow GCA patients to have TCZ for longer than 12 months and that the decision was imminent. In fact it should be decided before my allocation runs out and I may be lucky enough to be able to continue 🤞
Im feeling really well today as I think the thought of increasing the Pred even higher was making me anxious and im so glad to be down to 7.5. Pretty impressed with my team, phoned Rheumatology Friday morning had call back Friday afternoon, scan arranged for Monday morning together with consultation and all sorted (hopefully).
Thanks for letting us know how you got on. You really couldn't ask for better care than that!
I wonder if those of us who have had our 'ration' of TCZ might be able to start it again if the decision goes in the right direction.....?
Whilst on TCZ, I stayed on 5mg pred for 8 months and then reduced at 0.5mg / month, taking another 10 months to get to zero pred. Slow but sure!
I would hope so and if I hear anything when I go back in October I will certainly post again. I think the Rheumy's are frustrated that when they know something works for a particular patient and helps them they are restricted on the amount of time it can be used. But that's the way of the world Im afraid. From 5mg Im going to go slow but sure although I have had several spinal fractures and want to be off Pred asap, don't we all 😀