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.


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

Some updates

Another critter

A few snippets. First of all, apologies to any forum users who got put off by all the junk that had built up there in the last month or two. I have now cleared this out and will endeavour to keep a better eye on things.

One of the main international sites for rare diseases at the Genetic and Rare Diseases Information Centre has recently updated their page on CLIPPERS. Of potential interest for UK readers, they now list two UK organisations (Encephalitis Society and Brain & Spine Foundation) who may be able to offer support for CLIPPERS.

I'm seeing my neurologist next week for the first time in a while. As usual I'm wondering whether he will suggest any change in treatment. With that in mind, another recent case-report caught my eye as there were similarities to my own experience* and an emphasis on the need for continuing immuno-suppression.  The patient had facial paraesthesia (check), ataxia (check) and diplopia (check) and was treated with intravenous methyl prednisolone for 5 days (check) followed by a steroid taper starting at 60mg/day (check). However other non-steroid medication was not used in addition, and after steroid treatment ceased she relapsed. In the second round of treatment, Azathioprine was introduced during the steroid taper and maintained subsequently; there has been no further relapse for at least two years. So I think I'll be sticking with the Azathioprine.

*Update: Dr Tobin remarks that this case isn't completely typical of CLIPPERS.

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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.