Sunday, 25 January 2015


A "Happy" meal I had over Christmas
A belated Happy New Year to everyone out there. January 2015 marks the 3-year "anniversary" of when my CLIPPERS symptoms retreated far enough for me to function more or less normally. At the time I was still on tapering Prednisolone and attempting to ramp up Azathioprine while dealing with a few wobbles in various blood tests along the way. I remember book-keeping the changing doses of various drugs needed a certain amount of organisation. There were worries about long-term prospects in 2012 (there still are!) but I have been lucky to be stable on Azathioprine for some time now. 

Although Azathioprine is a common CLIPPERS treatment in conjunction with steroids, I don't recall any cases being reported who have remained stable for this long after the complete removal of steroids. It would be interesting to know if anyone out there is being treated similarly. Am I simply lucky, an anomaly or living on borrowed time? I still occasionally try walking "heel-to-toe", standing on one leg with/without eyes shut etc to try and pick up any early signs of recurring problems. It will be interesting if, as part of their CLIPPERS study, the Mayo team have any comments on my case compared with others.

Finally, a reminder that for those interested in events which raise the profile of rare conditions, the annual Rare Disease Day is coming in February (28th to be precise).

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Tuesday, 23 December 2014

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
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.

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Friday, 5 December 2014

Nothing to see here (probably)

A birthday card I saw
  recently - seriously!
It's all been a bit quiet on the CLIPPERS front lately, so apologies for the slightly sporadic updates at the moment. Another one of these complicated single-case studies has appeared though, so I'll give you a quick run-down. The essential feature of this 62-year old woman's story is that she was diagnosed with CLIPPERS after an episode of shingles which was concentrated on her left ear, eye and face. There is quite a lot of detail about different treatments and symptoms but essentially, when CLIPPERS symptoms first appeared, a left-sided brain lesion was seen on MRI which later developed into a more classical CLIPPERS pattern of lesions towards the back of the brain. This is an interesting case, but as is quit common at the moment, one that is so unusual it is hard to draw too many firm conclusions. I picked up on a couple of things in the paper though.

Firstly the authors speculate that (my paraphrasing) shingles and CLIPPERS in this case are related due to the "time-course" and "laterality". So the time-course means that one follows the other; but just because  the bus arrives after I stand at the bus-stop doesn't mean that I caused the bus to arrive by standing there - correlation versus causation. Secondly, "laterality" means "same-side"; so here, the shingles manifested on the same side as the subsequent brain-lesions. However, for the sake of argument consider that the shingles were completely unrelated to CLIPPERS and were a random occurence (the so-called "null-hypothesis"). Then there is a 50% chance they would manifest on the same side as the initial CLIPPERS lesion even if they had nothing to do with CLIPPERS. Of course, if we see more cases like this then the arguments for time-course and laterality strengthen.

To be fair the authors do go on to say that they "do not believe that the CLIPPERS syndrome is directly caused by the ... viral infection" and flag well the parts of their discussion which are speculation. I hope these cases keep being reported as my impression is that the diversity of CLIPPERS cases appearing over the last couple of years suggests that it could be part of a much larger puzzle concerning a variety of more common brain conditions.

It will be interesting to see if any more cases involving shingles appear. I had facial shingles in 2014 (also on the left-side) after developing CLIPPERS in 2011. In my case, shingles was almost certainly a consequence of immune-suppression from CLIPPERS treatment and being generally run-down. I am pleased to report, that in my case at least, shingles has not caused any resurgence in CLIPPERS symptoms.

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Monday, 3 November 2014

Steps in the right direction ... hopefully

Rainy London
To counteract the grey skies, shortening days and dipping temperatures in the UK, there has been a hint of progress in our understanding of CLIPPERS. In their paper Effective antituberculous therapy in a patient with CLIPPERS: New insights into CLIPPERS pathogenesis, Dr Mele and colleagues describe a CLIPPERS case which was initially diagnosed and treated as suffering from CNS tuberculosis. After 18 months of treatment the patient no longer had significant symptoms and only slight MRI abnormalities. 

The interesting thing is that 6 months after tuberculosis treatment was stopped, the patient relapsed and then improved again when tuberculosis treatment was restarted. My reading of the paper is that the first treatment round should have guaranteed that no tuberculosis was present yet they still improved when treated for it again. At this point the patient was re-appraised and treated for CLIPPERS with Prednisolone at which point more marked improvement was seen.

So the interesting result is that improvement in a CLIPPERS patient was seen whilst being treated with drugs not usually used for CLIPPERS. The authors note that one of these drugs (rifampicin) is anti-inflammatory and is also thought to be helpful for rheumatoid arthritis. They speculate in some detail about the possible mechanisms by which this drug may operate.

This is a very interesting article and I don't pretend to understand the detail. As I am not a doctor, there may be short-comings that I don't appreciate (not least the usual problems of diagnosis) so some caution is required. However, the authors should be applauded for not claiming too much. They report a single interesting case and discuss possible consequences including the potential use of response to rifampicin in diagnosis, but do not go over the top. In my opinion, this work is perhaps more valuable for providing possible clues and new directions for research rather than suggesting alternative CLIPPERS treatments. It is also the sort of paper that may well attract some interesting letters from other academics in the next few months. I will keep watch.

Read other articles in this series at Living With CLIPPERS.

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