2025 Update

On the tourist trail in 2025.

My CLIPPERS journey is the same as ever - take tablets, see Neurologist, occasional brain scan. I am grateful for being stable for so long, whatever the reason.

I updated the References for 2024/2025.

There's an interesting article on this link about Ben, an English chap who was about to start chemo for lymphoma when CLIPPERS was diagnosed. The article claims there are "only 140 recorded cases" worldwide but I suspect 140 cases in the UK (or at least Western Europe) is more realistic? Ben has turned to fundraising and generating music about his experience, and has a YouTube and WebSite to showcase his creations.

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.
A Book on CLIPPERS is now available.

A Cautionary Tale

The blasting of the innocuous-looking spot.

It's thirteen years since I was diagnosed with probable CLIPPERS and like everyone else, I'm ageing, slowly and hopefully gracefully. The skin on my face is increasingly dry and irritated and as someone who is very fair-skinned I know I need to be careful with sun-exposure. Recently I noticed a small but persistent spot on my cheek and eventually decided to get it checked out. The doctor said that she could see I was taking Azathioprine and that my skin wasn't great, but she couldn't see a record of skin-reviews. I said that I was aware I had to be careful with my skin but I had never been invited for a skin-review. So that's how I found myself referred to the dermatology clinic in the local hospital under the NHS rapid referral scheme which is usually used when there is a cancer concern. The doctor said she was almost certain there was nothing serious present, but with my history I should be looked at quickly.

    The dermatologist diagnosed various keratoses, told me there was nothing to be concerned about, and then produced a liquid nitrogen gun and froze the original innocuous spot. You can see the evolution of it from almost invisible spot to a blister and then slowly healing skin in the picture. Now there is no sign of it.

    I'm taking a few seconds of your time in the hope it will remind anyone on Azathioprine or drugs with similar warnings about sunlight exposure and the need for skin reviews to take them seriously and hopefully head off any unnecessary unpleasantness.  Although I slipped through the original monitoring net, at least someone alert picked up on it when I subsequently did have a concern.

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.
A Book on CLIPPERS is now available.

A Book on CLIPPERS promotion

Just a quick update that the ebook edition of "A Book on CLPPERS" will be free worldwide on Amazon from tomorrow (Thursday 5th October 2023) for 5 days.

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.
A Book on CLIPPERS is now available.

Updates

On Cheddar Gorge in 2022

Time for a few brief updates. Thanks to those who have read the CLIPPERS book and those who left a rating on Amazon; I hope you enjoyed it or found it useful, or both.  You may have read that Amazon are raising their global printing costs in June 2023, but the CLIPPERS book will remain at it's original pricing for now.

I had a telephone review with my consultant recently and, following a brain-scan last year which reported essentially normal (or at least no change), had nothing much to update him with. It's nice to have retained the same consultant through my CLIPPERS journey, which makes catching up easier (for both of us!). We had our now traditional conversation about future treatment strategy. I've been lucky to remain stable on Azathioprine since being weaned off steroids about 9 months after diagnosis. Taking Azathioprine comes with a small hypothetical risk but trying to compare that against the risk of not taking it for CLIPPERS is very hard. My view has always been that CLIPPERS can cause serious and potentially long-lasting problems, which in my case meant a month in hospital and easily six months in recovery; but at least I did recover. The risk of relapse is real but unfortunately unpredictable. Judging by the number of CLIPPERS case reports still appearing, relapse is still common so as before,  I said I thought that relapse was a bigger gamble and my consultant was happy to support that decision.

The fact that I still can't gauge a risk of relapse made me think. I don't have an inside track to the latest knowledge about CLIPPERS, but reading some of the recent papers  makes me feel that in some ways things haven't changed very much. Here's an example from 2023:

"The diagnosis of CLIPPERS is difficult and requires extensive differential diagnosis. A specific biomarker in serum or cerebrospinal fluid (CSF) for this disorder is currently unknown. The pathogenesis of CLIPPERS remains poorly understood and its nosological* position has not yet been established. Whether CLIPPERS represents an independent, genuine new disorder or a syndrome in the course of diseases with heterogeneous aetiology and/or their precursor stages remains debatable and incompletely clarified."

(*nosological = disease classification including an understanding of mechanism)

I accept everything said in this extract, but it could have been written for virtually any CLIPPERS paper over the last ten years. I hope in another ten years a similar extract will read differently.

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.