Life in Lockdown

The daily "commute"

The UK is emerging from coronavirus lockdown - too soon? - and as one of the "clinically highly vulnerable" due to immunosuppression I have been advised (the UK government *advises* the vulnerable rather than instructing them) not to even leave the house for the last 3 months. Having carried out my own risk assessment I decided that it was better for my sanity and physical well-being to take a daily walk around the nearby park and field. Some days a bit of planning is required to avoid dog-walkers but going before work (I'm working at home) means there's very few folk about. So far so good and a world away from my usual two-train journey into and across London. Whether I ever go back to that commute is a discussion for another day, but work are currently saying we shouldn't expect to be back in the office this side of Christmas - I won't argue with that.

The future is a bit less certain for us "shielders" as we continue to be at risk with the virus in circulation. The big question is how much risk? I may be classed as vulnerable but I am not unwell or unfit so who knows how I would deal with COVID? An effective vaccine may be the only way to get some certainty while the virus is still around. There are many teams working on different kinds of vaccines including a trial currently in it's early stages at Imperial College in London. Vaccines which rely on live virus (not the IC one) may not be suitable for people like me despite their likelihood of  being most effective. For the time being it's a case of keeping my head down until the picture is clearer.

Like many others in the UK I've had a couple of bad viruses this year already. One was cold-like and knocked me out for two weeks plus at Christmas. I had another around Easter - not sure how I caught that! - which was more sore-throat and cough. No temperature on either occasion but had some episodes of breathlessness including one particular evening at Easter where my heart was pounding and I couldn't get to the kitchen and back without panting. Were either of those COVID - I've no idea but they weren't classic symptoms and I wasn't tested. When they get the antibody tests sorted out I will try and get tested just to see .... in any case it currently isn't known whether a positive antibody response guarantees resistance. We continue to live in interesting times. Stay safe!

Read other articles in this series at Living With CLIPPERS.


Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

Did something happen?

It's a thumbs up from me

It's been longer than I thought since I last wrote something here. This reflects that in my life, as far as CLIPPERS goes, not much has changed. Still taking the tablets, still deciding in conjunction with my neurologist to keep taking the tablets, still wondering if I will always be taking the tablets.

But probably for me and everyone else reading this blog, something has changed. The emergence of SARS-CoV-2 (the virus) and COVID-19 (the illness) looks like it will affect most people in some way even if they don't catch it. I'm not going to speculate wildly about COVID-19 but one thing I know: people with compromised immune systems are more at risk and I am one of those people. Actually maybe I know more than one thing; my understanding is that people like me are not more likely to catch it, so we can take steps to reduce our exposure, and we not certain to have a more serious illness - it's all about risk. Still, I don't like playing games where the odds are biased against me and this seems like one of those situations.

I had already been mulling whether to work from home more (I'm lucky because I can) and at what point I should do this. I travel to work on several different kinds of public transport, which are often busy, in a city with rising numbers of cases, and the government estimates there may be up to 10 times more cases than they know about. My employer has been proactive though and issued a statement yesterday saying that anyone classed as vulnerable by Public Health England should work at home from now on. So that decision has been taken out of my hands and I feel relieved if somewhat daunted at the prospect of being at home for several months. 

There are lot's of unknowns still. The UK government is in a "delay" phase of managing COVID-19. Paraphrased this means: (i) "we can't stop it spreading, so we will slow the spread so as not to overwhelm the health services" (ii) "we will protect the vulnerable in the hope that enough other people build up resistance to stop it spreading further". Whether or not (ii) will be effective is the big question. All we can do is keep calm and carry on. And wash our hands relentlessly.

Read other articles in this series at Living With CLIPPERS.


Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

CLIPPERS or SLIPPERS?

https://commons.wikimedia.org/wiki/File:Illu_tentorium.jpg

I was recently contacted by someone with a close relative who had been diagnosed with possible "SLIPPERS" syndrome. I initially suspected a typo but then realised that this was a CLIPPERS variant which had passed me by. Initially proposed by Dr Armand in 2015 this condition differs from CLIPPERS in which part of the brain is predominantly affected. In CLIPPERS the enhancing lesions seen in MRI are concentrated below the Tentorium (see image above). In SLIPPERS (Supratentorial Lymphocytic Inflammation with Parenchymal Perivascular Enhancement Responsive to Steroids) the lesions are concentrated above the Tentorium. The two patients in the original case-study both responded to treatment similarly to CLIPPERS but had presented with seizures and headaches respectively which I think are less common in CLIPPERS. Another patient was subsequently reported by Dr Horng in 2017 who also responded to similar treatment. It's unclear to me whether this is really a distinct syndrome or just a variant of CLIPPERS but at least the treatment response is very similar so the difference for treatment purposes is not crucial (it would seem - I'm not  a doctor).

In other news my medication (Azathioprine) is mysteriously unobtainable in my locale currently for reasons unknown to me. Is it a manufacturing problem, supply problem, hoarding problem? I don't know but it's been suggested I ask my doctor for an alternative - may be easier said than done as, having been stable for quite a few years, changing meds at this stage is not on my agenda. There was a shortage a few years ago which resolved after a few weeks so hopefully the same thing will happen again.

Read other articles in this series at Living With CLIPPERS.


Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

2019 Update

I'm acutely aware that the interval between posts on this blog is steadily lengthening. The reason for this is simple - CLIPPERS simply isn't affecting my day-to-day life much. My current schedule is: take medication twice a day, renew prescription every two months, get blood test every 3 months, see consultant every 12 months ... and that's about it. In other regards I live normally apart from being a bit careful going down stairs. Of course it may not always be like this. I may eventually have some malign consequence of being on these drugs for so long. This could in itself be serious or force me to switch medication. I could have some unrelated health problem which has the same effect. And then, all bets are off.

In parallel, as far as I can tell, researchers are still working on CLIPPERS, presenting new exotic case-studies and gradually gaining some more understanding of what it does. One recent letter succinctly sums up the current state of affairs for diagnosis of new patients and things haven't changed much: "its lack of specific lab findings, poorly understood pathogenesis, and variable symptoms, making it a clinical and radiological diagnosis of exclusion." If you are diagnosed with CLIPPERS you have probably had the following conditions excluded first "neurosarcoidosis, central nervous system Behçet's disease, vasculitis, central nervous system lymphoma, lymphomatoid granulomatosis, Bickerstaff brainstem encephalitis, chronic perivascular infectious process, glioma, central nervous system demyelinating disease, and Langerhans cell histiocytosis"

On the other hand, CLIPPERS is now sufficiently recognised that a recent paper examined the diagnostic costs involved for two patients who had differing numbers of tests but the same outcome in terms of treatment. The cost was approximately $176,000 versus $12,000. Given the diagnostic problems discussed above this seems to me quite a dangerous publication. The authors do comment on reducing invasive testing being good for patients - I agree - and following criterion reccommended by Dr Tobin, but the emphasis is on cost comparison even in the title. Skimping on diagnostic work-up when the consequences of mis-diagnosis are so huge and there is no definitive test for CLIPPERS  is foolhardy and I hope cost doesn't become an issue for proper diagnosis.

Read other articles in this series at Living With CLIPPERS.


Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.