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November 2022

So the last month has been a total exercise in survival. Uncontrolled rheumatoid arthritis makes life utterly miserable - swollen hands, feet, hips, back, shoulders, neck and nausea/vomiting from the pain, with constant fever. BUT: I am beating the BK Virus.

Now I just need to speak to renal and rheumatology and try to get back on the biological therapy (JAK inhibitor) that has controlled my RA for so long.

My levels have gone down from 9.7m to 4m to under 1m. (Unsure of the unit - it's DNA replications per microlitre or something.) The IVIG helped. Kidney function is back up to 20%, which is apparently as good as it will get now with the scarring from the virus.

A good indicator of how the body responds to pain and RA is shown by my watch's heart rate variability measure. The blue bits - showing a more relaxed state - were in the night after painkillers. The angry orange spikes when they wear off, even when asleep.

Grateful to the renal team at the Royal Free Hospital for their help. (Except the on-call reg who refused my call re an urgent prescribing error. No thanks to you.) They're also studying my case for research as a rare instance of BK Virus nephpropathy in a native kidney.

Thanks to everyone who sent messages of concern because I've been quiet on here. I've been quite seriously unwell and hospitalised the past few weeks. Getting back on my feet now.

Antibody therapies against Covid-19 for most vulnerable patients work, new analysis finds.

https://appg-vulnerablegroups.org/news/post/antibody-therapies-against-covid-19-for-most-vulnerable-patients-work-new-analysis-finds

This systematic review showed Evusheld was:

* 86% effective for preventing COVID-19 death,
* 88% effective in preventing intensive care admission,
* 69% effective in preventing a hospital admission, and
* 40% effective in preventing infections.

Yet still, the UK government won't procure it.

Mine always start with a disclaimer along the lines of "As I have the British gift for understatement, but am less familiar with American referencing customs, please do not interpret anything in this letter as less than total enthusiasm" etc https://t.co/4g3PYPmIYb

Hurrah! The work on this article is finally done. It's a fresh history of the development of the PDF with interview material with John Warnock and others. Forthcoming, open access, in Book History journal.

Making people pay for a verified account shows just how limited the understanding is of the function it serves. Assumes it's just all about fame and kudos, rather than protecting people - both impersonator and victim - from the harms of "identity theft".

Or perhaps not. Maybe it's more of a mafia tax. Nice account you got there. Be a shame if someone were to impersonate you...

Hospital food thread.

Woooah. We're halfway there. Almost defrosted, microwave impaired.

Casser-what?

The less said, the better.

My week has been a roller-coaster. Hospital admission has gone from conversations about starting dialysis, through oxycodone pain control, before finally, in the past 3 days, my kidneys... Started working again! 1/4

It's very early days - and it may be too soon to tell - but the sudden turnaround fits with the IVIG timing. Take THAT BK Virus! Maybe... 2/4

But this infinitely preferable to the other potential outcomes. 4/4

Of course, I still feel rotten because my rheumatoid arthritis isn't controlled, while we let my immune system get the virus. As I say, lots of tramadol and opiates to control pain levels. 3/4

Thinking of the suffering in redundancies and layoffs. If Twitter has 7.4k employees, Musk could have given them $5m each and it still would have been cheaper than buying the company for $44bn.

So, things are not so straightforwardly good as they might have seemed earlier - and we just don't know yet. Had a visit from the dialysis team. Serves me right for being optimistic.

Some good news! My eGfR was down to 15 - which is kindof a %ish indicator of kidney function - declining at 3 or so per week. Anyway, it was not great and trajectory was very bad.

But it's stated turning around in the last 24hrs!

Early days... They may want to do another biopsy... Need to see what the repeated blood tests show... But this is extremely promising.

Also, the hospital gave me this to eat, which purported to be a cake of some kind. Who knows?! 🤷🏻

My friend @ersatzben is running the London Marathon for @VersusArthritis and doing so in my name.

This charity has literally saved my life with its research, multiple times. If you can donate even a small amount & RT, I would be so grateful. Thank you.

https://www.justgiving.com/fundraising/Ben-Johnson53?utm_campaign=lc_frp_share_transaction_fundraiser_page_launched&utm_content=e8d46f54-e44d-4988-aa90-a6440d2ffc2c&utm_medium=email&utm_source=postoffice&utm_term=1667412479043

Meanwhile, I regret to say that I am being readmitted to hospital. Kidney results yesterday were worse, again. But mostly, right now, I need to control the flare of my autoimmune conditions, which are giving me raging nausea and head pain, while we work on the kidneys.