vivdunstan

Got this late afternoon in Dundee city centre. I am still offered these Covid vaccines twice yearly by the NHS, being severely immunosuppressed. Very quiet vaccine centre - no one waiting when I got there early. I suspect they have a lot of no shows in the current 75+ group. I was weeks earlier for my vaccine than I might have been, keen to get it before my Capercaillie music concert in 3 weeks.

Because I was seen so early we were able to get an early takeaway dinner from a fab fish and chip shop that is sadly shutting its Dundee branch after this weekend. Sat below the uni, overlooking the River Tay to Fife. Bright evening sunshine, and surrounded by optimistic but unsuccessful seagulls. Martin also spotted wild bunnies on the grass down the steps, so dashed down to photograph them.

Planning a very quiet weekend. I expect to be feverish and very sore overnight. More seriously I will probably have a 3 month long flare in my autoimmune brain disease, starting about a week from now. It’s very difficult. But I will be protected.

Back to the Urban Crow deck, and as usual my 3-card past/present/future spread.

Play / Anomaly / Anticipation.

There could be lots of interpretations of these cards. But looking at them I'm immediately reminded that I'm in a brief phase of slightly better health at the moment, and about to go very very downhill again in a few weeks time. So I've been having fun, and trying to make the most of it. Albeit hampered by my failed experimental immunosuppression dose change from May. Which still needs a few weeks to resolve itself since the dose went back in September (it takes up to 12 weeks to show the full effects).

Admittedly I've had post Covid vaccine flares so many times (9/9, with my 10th Covid vaccine due in a couple of weeks) that it's hardly an "anomaly" in my life! But it is still phenomenally disrupting each time, very distressing, leaving me extra incapacitated with devastating increased neurological symptoms for 3 long months at a time. It's a never-ending rollercoaster. But not one I'm willing to get off. I want my vaccine protection too much, and severely immunosuppressed me really needs it to get through Covid ok. Which we keep catching.

On plus I've got Christmas looming in the next few months, and that's what the last card today shouts out to me. I am not religious - was brought up vaguely Church of Scotland, but I've been agnostic for many years. I take after my Dad re this. However I love the mid winter festival that is Christmas, and the sense of snuggling down, in the warmth, with good food, and celebrations. So that's something to look forward to. Even if I will still be neurologically flaring very badly then.

This year we can also look forward to our annual pre-Christmas rewatch of 1984's TV Box of Delights being the new next month Blu-ray remastered version. So that will be a treat to carry us through to Christmas too.

Martin has only an extremely faint positive today. And is feeling good. Though overnight he had extreme disco/sparkly visual effects, and a throat like a dagger in it. But good today. I am still testing negative. Though I may yet catch it from him, and get iller. But we are doing good for now. He is going to be working on the computer in the study today, and working from home all week.

He was masked up almost all the time we were in St Andrews on Friday, including in queues for the Cheesy Toast Shack and Jannettas. Both queues were phenomenally busy, and there were some scary coughs among the queuers. The first queue was outdoors, but unbelievably busy. The second queue was a mix of outdoors and indoors. So my theory now is that Martin probably picked it up in one of the queues (he hadn't been out of our house for over a week before). Which I was not queuing in. So I may yet catch Covid from him. And would, if I test positive, decide whether to ask for Paxlovid antivirals (very few people can get Paxlovid in the UK, but being severely immunosuppressed I am eligible). But if we're lucky it won't come to that ...

Sticking up a new version of our "weak immune system" poster inside our front door. The original went up almost 4 years ago. But it's faded a lot, so needed replacing. And yes it's still applicable. Despite vaccines and anti virals that I can access.

Latest Covid (my 8th) and flu (umpteenth) vaccines acquired. Huge thanks to the friendly and efficient NHS Tayside staff and volunteers at Dundee city centre vaccination centre. Immensely grateful to get this, as someone who is severely immunosuppressed. And is now thankfully generating antibodies.

Got my latest antibody test results today. Here’s a graph. It’s incomplete, and beware 2500+ is the upper range, and doesn’t go more precisely. But basically since my bonus extra 3rd primary vaccine in autumn 2021 I have been getting very good responses. And it’s lasting. I had virtually no Covid antibodies after my 2nd Covid primary vaccine but got an extra 3rd primary because I am severely immunosuppressed to try to bring me up to where other people were after two vaccines. I am very very lucky getting good responses now. Many immunosuppressed people don’t get any protection from the vaccines. But it’s helping me, even if at great personal cost. My brain autoimmune disease is very unstable, and a week after every Covid vaccine it starts flaring, with appalling neurological symptoms. And that goes on for 3 long months each time. But the vaccines could save my life, so I keep getting them. And coping with the flares. But yay antibodies! My 7th Covid vaccine will be a fortnight from today. I expect to be extremely ill from mid June through mid September. But it is worth it. And we haven’t caught Covid yet.

This is such a disappointing result for immunosuppressed people like me. Other countries around the world gave Evusheld to their immunosuppressed people a year or more ago, offering them vital protection at that time - which worked - against the then variants. The UK government chose not to, and delayed the decision making process so much in a rapidly changing variants situation that now the much delayed result is no. On plus there is a new version of Evusheld being developed. And on plus NICE has admitted that the current decision making process in such a time critical setting needs to be speeded up hugely. But yup, very disappointing. I am very lucky that I do have some good antibodies finally after 6 Covid vaccines, with a 7th vaccine probably due in the next few months (which will probably cause another 3 month long neuro flare, but ...). But many immunosuppressed people are not so lucky.

https://www.nice.org.uk/news/article/nice-says-no-evidence-that-covid-19-treatment-evusheld-is-effective-in-protecting-vulnerable-adults-against-current-variants-as-it-announces-new-rapid-update-process-for-covid-19-medicines

Really shocked at the cost of someone else receiving Evusheld privately in the UK, a preventative medicine against Covid to help immunosuppressed patients, many of whom do not generate any antibodies from vaccines. Unlike other countries the UK is not providing this publicly.

A single treatment of Evusheld lasts 6 months. It would cost up to £800 to the NHS but it’s not approved unlike so many other countries. It’s newly approved privately in the UK, and we’d been told £1000. Well someone I know has just got it. And it’s way way more than that.

£500 for consultation with a private doctor, £1600 for the drug, £160 administration. So about £2400, out of someone’s private coffers and that’s I think for just 6 months protection. This drug could save thousands of extremely vulnerable lives. Normal people can’t afford this.

I’m extremely lucky I’m getting some good antibodies, after 6 Covid vaccines (yes 6!). Though Covid vaccines trigger a devastating 3-month long neurological flare for me every single time. But Evusheld would make me feel safer, and protect others far more. Provide it on the NHS now!

Evusheld could be provided on the NHS to patients at considerably less cost per dose than private providers are selling it to patients directly. Yes it has a cost but for 500K people who are not being protected enough by vaccines and still at phenomenal risk it is needed now.

Here is the blog post by a literature prof outlining the costs and why he went for this.

I’ve blogged some thoughts on this, inspired by a recent blog post from a fellow academic who is in a similar situation. Though I envy him taking the dog out for walks!

Thought I should order in some more repeat prescriptions. Checked my spreadsheet, and the online ordering record. And then ordered 12 different drugs. Eek! I currently have 16 things on my repeat prescription, which is quite a drop from in the past. That's why I need a spreadsheet though! With this many things, all running out at different times, it makes sense to order them in together when convenient. As a Scot I don't have to pay anything at all for my repeat prescriptions, not even a prepayment certificate. I am phenomenally grateful to the NHS for supplying me with these vital medicines, for 22 years now. A mix of drugs, some controlling my auto immune neurological disease (especially steroids and another immunosuppression drug), some to help with symptoms I have (e.g. bladder incontinence), some to help with things I've developed from the disease (e.g. osteoporosis and generalised anxiety disorder), and some to help with side effects of the other drugs (e.g. nausea and diarrhoea). But all gratefully received, and very much appreciated. I dread to think how I'd manage in a different non public health system. Thank goodness for the NHS.