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.

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.