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.

Extending CLIPPERS (again)?

As time goes on, there seem to be more case studies which veer away from the characteristics of the original cohort described by Dr Pittock. In this recent report "An extended chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids phenotype", Dr Lane and colleagues describe an interesting new case with some unusual features. (Unfortunately full text for this article is not available on-line, but those interested could try emailing the senior author Dr Robin Howard and asking for a pre-print.)

The earliest symptoms of the woman in this case study were initially right-sided facial weakness with abnormal cold sensations on her left leg. It was over a year before scans revealed CLIPPERS-type brain lesions. However in this case there were more wide-spread lesions ("cortical involvement") than in some other reported cases and she suffered seizures. The CLIPPERS symptoms improved immensely after 5 days of high-dose steroids (although at 500mg/day rather than the 1000mg/day I received). Of interest to me  is that this patient was then moved onto a tapered dose of Prednisolone starting at 60mg/day (like me) and subsequently onto Azathioprine (like me, but dosage not reported). She has apparently remained well 6 months on. 

My experience is not directly comparable to this patient as my symptoms were much more in the "classic" vein (i.e. limited to double-vision, balance, speech, symmetric facial and limb numbness). However interesting to see the use of Azathioprine when it seems more common to prescribe Methotrexate or Cell Cept. I'm not convinced Azathioprine is a magic bullet but suspect that different people react to the disease and the treatment in different ways; but I am not a doctor.

Interestingly, my doctor said recently he still has no idea why some people seem to relapse on these "steroid-sparing" agents but remain well on steroids, as both treatments should have essentially the same action.

In other news I finally got round to sending my consent forms back the Mayo for their study.

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.

Brief Repository Update

Colin the Caiman

I received an email from Dr Tobin at the Mayo Clinic recently to update me on their CLIPPERS Respository project. This is a systematic approach to CLIPPERS research which involves gathering as much information about patients as possible in one place to enable detailed research. If you have a diagnosis of CLIPPERS and want to take part, you can read more on the CLIPPERS Repository page.

Anyway, they are currently focussing on patients who had tissue samples available and they have 12 enrolled to date which they are very pleased with. This data is enabling them to take a more comprehensive look at the common features of the condition across different people with less doubt about the possibilities of other diseases being present. There should be some more news about this in the near future.

They are also still very much interested in recruiting people with a CLIPPERS diagnosis but who didn't have tissue samples taken. These people (like me) are still a valuable resource and will form a larger cohort which can be used in the next phase of the research. I have signed up and will update you about the process when I get my enrolment kit.

Apparently, some other laboratories are talking to the Mayo about the possibility of performing different analyses on some of the samples. I think this is particularly exciting as it means there may be a competitive element which will help drive the research. I am hopeful that with this kind of approach some progress can be made in finding out more about what CLIPPERS really is, and how to best treat it.

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.