I was a scientist working in the UK for many years who was diagnosed with CLIPPERS in 2011. Coincidentally I worked in neuroimaging in a computer science (image analysis) role. Apart from some familiarity with brain-scanning technologies I have no great insight into neurological conditions and as I say in the blog frequently resorted to Google to find out stuff just like anyone else. What I do want to emphasise is that I am not a medical professional or qualified or able to give advice. CLIPPERS is still very new (even in 2023!) and sufferers have a diverse set of symptoms and responses to treatment. What you can read here is my own experience which will be very different to another CLIPPERS sufferer. Although there is some consensus regarding treatment, approaches must be tailored to the individual. I hope this blog is informative and helpful but always seek professional medical advice if you are concerned about the issues raised.
July 2023
I'm still well now on 100mg + 50mg Aziothioprine as the original dose was working a bit too well at suppressing parts of the white cell count. Consequently blood-tests have been back at quarterly for some time. A brain scan in 2022 showed no change or pathology.
December 2015
I'm still well on 100mg Azathioprine twice a day. I am officially "in remision from cerebellar disease" which means it could still come back. My blood-tests are now twice a year but having suffered a bout of shingles last summer I still have to be careful. My immune system is compromised by the drugs but being careful has meant I have fewer minor ailments than many people I know - of course I still have the one major one.
October 2013
I'm still here and stable on 100mg Azathioprine twice a day. I have blood-tests every three months (full blood-count, liver function and urea and electrolytes) to watch for Azathioprine-related problems. Currently I only have annual clinic appointments with my neurologist (unless "something bad" happens in the interim).
October 2012
I'm currently stable and symptom-free on Azathioprine and slightly nervously waiting to see what happens over the next few months. I've heard from quite a few fellow "CLIPPERS" over the last year and their encouragement has been key in keeping this thing going. Best Wishes to you all.
October 2011
It's been a difficult and uncertain few months. The support of those around me, in particular my wife, my sister, my friends and my work colleagues, made things bearable. Thanks to all for your help and continuing support - you know who you are.
I'm still well on 100mg Azathioprine twice a day. I am officially "in remision from cerebellar disease" which means it could still come back. My blood-tests are now twice a year but having suffered a bout of shingles last summer I still have to be careful. My immune system is compromised by the drugs but being careful has meant I have fewer minor ailments than many people I know - of course I still have the one major one.
October 2013
I'm still here and stable on 100mg Azathioprine twice a day. I have blood-tests every three months (full blood-count, liver function and urea and electrolytes) to watch for Azathioprine-related problems. Currently I only have annual clinic appointments with my neurologist (unless "something bad" happens in the interim).
October 2012
I'm currently stable and symptom-free on Azathioprine and slightly nervously waiting to see what happens over the next few months. I've heard from quite a few fellow "CLIPPERS" over the last year and their encouragement has been key in keeping this thing going. Best Wishes to you all.
October 2011
It's been a difficult and uncertain few months. The support of those around me, in particular my wife, my sister, my friends and my work colleagues, made things bearable. Thanks to all for your help and continuing support - you know who you are.
