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).
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HappyDiamonds
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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 😀
That all sounds very positive. Fingers crossed about the Tocilizumab extension. Scans are so much better than biopsies, initially anyway and less margin for false negatives. My abnormal cells were found in my armpit.
They scanned my lower neck/shoulder but that was clear, I honestly don't know the reason for scanning there, presumably its a guide to know whether you have inflammation elsewhere.
Yes - I thought there was something going on - about blooming time too! It is disgusting that RA patients get it indefinitely but GCA patients don't. I was part of a NICE meeting not so long ago and they did get iffy when it was inferred we felt there was a discrimination against GCA/PMR patients because we tend to be older!
It is another factor in my wanting to stay here - I get things here I'd never get in the UK.
PS - not the way of the world, the way of the UK I fear.
Not so with my GCA which I've had on going now for ten years in November. I got off predisolone after two years but since then have had three relapses.
Im sorry to hear that, must be frustrating for you but what I said about the 2 years was tongue in cheek. We all get so cheesed off with medics telling us "it only lasts 2 years" when we are living proof that's not the case. 😀
I live in Rural Somerset but I am treated wonderfully at Royal United Hospital in Bath by the Rheumatology team there, physios, imaging and specialist osteoporosis nurse team who also advise the Royal Osteoporosis Society which is in Bath. Its a whole new wing of the Hospital purpose built to take over from what was the famous Mineral Hospital in Bath city centre. Honestly can't speak more highly of them.
I truly hope that TCZ becomes available for as long as any patient needs it! I'mI'm in the the states and and cannot imagine where I would be without it. I know over these past three years...without it I would have lost more sight. I am now in single digits for the first time!!💕
My husband was admitted to that hospital a couple of years ago when he was taken ill on holiday in Wells. I felt like I walked miles and would have been lost without help. It is so big with two main front doors.
Even bigger now as they are building an Oncology Wing. Luckily it isn't necessary to enter the main Hospital for Rheumatology which hadn't long been built and opened when I was diagnosed. Its the car parking there that's the nightmare. By coincidence Im off to Wells to meet a friend for coffee this morning and hoping it doesn't rain as we sit outside in the Market place and watch the world go by.
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