Has it really been that long?

Dartmoor 2022 Some rare sun.

You know how it is; there's something at the back of your mind that you feel you really should do but you don't quite get round to doing it. And so when I looked back at this blog page it was a bit of a shock that no new posts have appeared for well over a year. (I'm pretty sure I did a bit of tidying up behind the scenes since then, but it's a poor excuse). I don't have an enormous amount to say, which is why there has been such an update drought, but I did manage to miss my own anniversary of a decade since being diagnosed with (probable) CLIPPERS in 2011. I've partly been prompted to write here after a nice email from a fellow CLIPPERS patient who hoped in passing that the blog silence didn't mean anything bad had happened.

Since the last post I've managed not to catch COVID helped by working almost exclusively from home and by taking every vaccine offered. The booster program is a little random here but they seem to be erring on the side of caution as I've had two initial jabs (Astra-Zeneca) and three Pfizer "boosters". I felt pretty mouldy for a day or so after the second Pfizer one but took more care with hydration and ibuprofen after the third which seemed to help. CLIPPERS symptoms have remained absent and I've now been taking Azathioprine for ten years which is not ideal but probably better than the alternative.

I very recently had my annual neurology appointment in London. It was strange travelling in to the centre on the train for only the third or fourth time in the last couple of years when I used to do the journey most weekdays. My status was reviewed by the same neurologist I saw when I was first diagnosed and I was judged to be stable. There's always the question about whether I want to stop the medication and I ask "what are the risks of relapse and what would be the consequences if I came off it" and no-one really knows; so I stay on the medication as it's kept me well so far.  I'll get another MRI in due course to provide an up-to-date reference in case there are any changes further down the line.

Hopefully it won't be so long before the next post. I hope everyone out there is staying as well as possible.

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.

Autumn already

A red pineapple plant.

Doesn't time fly? It's been six months since my last proper update and since then a very hot summer (by UK standards, 30C+) has been and gone and Brexit looms nearer. It's been hard to add interesting content to this blog recently. There are still new research papers on CLIPPERS appearing and I add them to the CLIPPERS Research Papers page when I get a chance. However, the majority seem to be quite niche and/or too specialised for me to understand to any extent. In addition I don't have any personal medical developments to report - just a vague feeling I've been taking Azathioprine too long (nearly 7 years) but not ready to try coming off it yet. We need more data!

Perhaps the most important new research is in cases of CLIPPERS in children. Two recent papers discuss this issue. The first from Mario Sa et al in the UK present three case studies of children diagnosed with CLIPPERS all of which had a poor outcome. They suggest that CLIPPERS may be a more aggressive and harder to treat condition in children. However in the second paper, Dr Tobin suggests that the three cases don't meet current diagnostic criteria for CLIPPERS (although they have a lot of shared characteristics). I have commented before on how this diagnostic uncertainty in CLIPPERS comes up again and again and, although the situation is slowly improving,  it would be a real advance to strengthen the diagnostic tests.


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.

Welcome To 2018

A reminder of warmer times.
It's wall-to-wall rain and sleet currently!

Wow, it's been a long time; in fact I hadn't quite realised how long. 2017 has slipped away with very little fuss. The posts on this blog have been relatively few in the last year which sadly simply reflects that I don't have much to report. My own condition is remaining stable and essentially asymptomatic. My Azathioprine dose has remained at 150mg / day  after being reduced when my doctor got worried about my neutrophil levels. In related good news I have avoided "Aussie" and all other flu variants so far (we are at peak flu season in the UK currently)|. Flu vaccine and careful hygiene, not least as I travel on public transport daily, have done their job.

In terms of wider CLIPPERS news, there is still a trickle of journal papers. The most common topics are case reports on single patients (typically those who don't fit the standard CLIPPERS pattern in some way), proposals for tighter diagnostic guidelines and papers discussing the possible links between lymphoma-type disease and CLIPPERS. I did a quick search and in the last three years the number of full journal papers on CLIPPERS seems quite stable at 4 (2015), 5 (2016) and 6 (2017). (There are likely more short conference papers which are harder to track).

I get the impression, admittedly without much hard evidence, that treatment is becoming more standardised, at least in the acute early phases of CLIPPERS. Managing people like us long-term is more variable, both in the range of treatments available and our collective responses to them! I have a meeting with my consultant in a few months so will pick his brain for any updates from the medical perspective.

Thanks for sticking with the blog and if anyone has any ideas for contents or wants to write an entry, let me know and we'll sort something out.

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.

Another Year

I take no credit for this - my wife's creation.

Just a quick note to wish everyone a peaceful and happy end to 2014.  My own Christmas break started off with an invoice from my local health centre. They had received a request for my medical records from the Mayo Clinic as I had signed up for the Mayo research study. It hadn't occurred to me there would be a charge for this - after all it is making a contribution to medical research. Anyway, although £24 won't bankrupt me, it wasn't quite the Christmas card I was expecting when I opened the letter!

I will be back in 2015 to pass on anything I can find out about CLIPPERS. If anyone has any news to share please contact me or post in the forum.

Best Wishes

-Bill

Probable CLIPPERS since 2011.

P.S. After writing this post, I received very nice emails from Jessica Sagen and Dr Tobin at the Mayo, telling me that costs incurred providing records for their research will be covered from their research budget. So thanks very much to them for that.

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.

First Birthday!

Happy Birthday To Us

Please excuse the slightly length entry - I think I can afford to be a little more verbose than usual to mark a year of blogging.

How It All Began

A year ago this week I was at home, very slowly improving, after nearly 5 weeks in hospital which culminated with a CLIPPERS diagnosis. A combination of high-dose steroids and cabin-fever from being at hospital and home meant I could talk about very little else than CLIPPERS (and boy could I talk). There were also a fair few people who wanted to know what was happening and despite my babbling I was getting bored telling them the same story and answering the same questions. So in an effort to save my marriage (by reducing the babbling burden on my lovely wife) and my sanity (by putting down a definitive account of my illness) LIVINGWITHCLIPPERS was born.

At the time I had no idea if I would persevere with it, not least as the diagnostic uncertainty meant there was a small but finite chance I could be dead by Christmas 2011. However I did gradually get better and the emphasis changed from just focussing on my own problems to providing a digest of what CLIPPERS news I could glean from the web.

Beginnings of a Community

Number of readers of livingwithclippers on a monthly basis

The readership has naturally ebbed and flowed over time and was initially quite high which I attribute to friends and family finding out what the hell had been going on! (When I say "high" I mean up to 20 visits per day - Rupert Murdoch has little competition from me although he has his own problems to deal with.) After Christmas 2011 the visits declined a little but in recent months there has been much more activity. I think there has been a shift towards people who don't know me personally but have some other interest in CLIPPERS for personal (or maybe even professional) reasons. I have also started to receive emails from fellow sufferers (what are we - CLIPPERS?, CLIPPYS?) from Europe, America and Australia.

Whatever their reasons for visiting, the readers of livingwithclippers are a global community as you can see from the map. (No recorded visits from Greenland yet, but I'm working on that.) And let's be quite clear that you have to want to come here. If you just search for CLIPPERS via Google you are highly likely to find other CLIPPERS before you get here: e.g. a popular basketball team, haircare products, boats, tea-bags etc etc Whatever your reasons for visiting, it's seeing the visits rack up week on week which keeps the blog going - there's nothing worse, at least in blog-land, than feeling you're posting straight to a black hole.

The Future

If you're living with CLIPPERS the future is uncertain but there have been some hints in the last year that although the disease is chronic it can often be managed and suppressed, at least in the short-to-medium term. I plan to keep the blog going while there is demand and I have something (hopefully) interesting to say. Maybe a more official support forum will appear at some point but for now you're stuck with my ramblings! But it doesn't all have to come from me. If you have some CLIPPERS news, or a CLIPPERS experience you want to share then send me an email and I'm more than happy to put some guest posts up here. Anyway, thanks for reading and hope to see you next year.

Brecon Beacons, South Wales, Summer 2012

 

 

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.