CLIPPERS and Grade 1 Lymphomatoid Granulomatosis

In May, I reported on a curious case of CLIPPERS which involved skin lesions. There have now been two follow-up letters discussing this case. In the first, Dr Taieb (who has also published CLIPPERS-related papers) suggests that CLIPPERS could be a manifestation of a grade 1 Lymphomatoid Granulomatosis which is thought to be a pre-lymphoma condition. The key comment (from my reading) is that grade 1 Lymphomatoid Granulomatosis and CLIPPERS may be indistinguishable in terms of diagnosis and treatment response. In addition,  grade 1 Lymphomatoid Granulomatosis "does not necessarily progress to grades II or III" which would presumably explain why there are so many "stable" cases of CLIPPERS out there.

 

In response to this, the original author, Dr Kossard suggests this association is premature. My interpretation of the letters is that it is hard to be sure, even from studying tissue samples, about any possible relationship between CLIPPERS and Lymphomatoid Granulomatosis. It does seem, though, that the net is very gradually tightening around CLIPPERS in terms of figuring out exactly what it is and where it sits in relation to other rare conditions.

 

 

In other not-so-exciting news, I came out in a painful rash on my face which I initially thought was caused by  insect bites but got gradually larger. I was quite surprised to be told by my doctor I had shingles. Of course, being immune-suppressed, means that despite this rash being fairly small on the scale of shingles, no chances are being taken. So now I am taking anti-viral medication five-times a day as well as anti-viral ointment for my eye (as the rash is closer than it looks on the picture).

 

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.

News Update

About 3 weeks ago, I had my first brain-scan of 2014, this time at the Institute of Neurology in London. I did ask my neurologist whether they were going to try anything different, as the IoN scanners are more research-oriented, but he told me they were just spreading the load of clinical imaging cases. It's funny, that having scans less often is in some ways more stressful because you wonder what might have been going on in the interim. Anyway, I have now had the unofficial feedback on the scans which was that:

"Everything is good. There was a tiny bit of signal change in the pons, as before and no enhancement. No change from last year."

So this is good news, especially as I have now been off Prednisolone for two years. Sounds like a bit of residual CLIPPERS-related damage which I will have to put up with, but I can't associate that with anything specific in day-to-day life.

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.