CLIPPERS Cases Update

Trees by Bonfire Light

Dr Tobin and colleagues from the Mayo Clinic in the US and from Ghent in Belgium recently presented a paper at the ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) conference. The paper is called "Defining a clinical, radiological and pathological signature of CLIPPERS (chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids)" and that it was presented at a meeting primarily associated with Multiple Sclerosis emphasises that these brain disorders shouldn't be considered in isolation.  The work concerns efforts for a better working definition of CLIPPERS to aid with diagnosis and involves finding the key things which CLIPPERS patients have in common. In this still relatively small group of 34 subjects, eleven were excluded because of various findings which conflicted with what is known about CLIPPERS. This shows the difficulties of the whole diagnostic process for CLIPPERS.

One thing I found interesting, is that of the 23 subjects remaining, gait ataxia was the most common symptom (21/23) with diplopia (double vision), although the second most common symptom, lagging behind (13/23). In my case, diplopia was the first symptom with ataxia problems following, first with balance problems and later on with coordination and speech problems.

Another interesting thing is that all 11 patients in the study who stopped steroid treatment suffered symptom recurrence; it is not stated whether these patients were on other immuno-suppressant medication or not. I have managed to stay off steroids while taking Azathioprine but it is not clear whether I am just lucky or whether there is something which distinguishes my disease from others. I should avoid the temptation to read too much into this paper though, as conference presentations are usually early work in very short format which are followed up later by more substantial journal publications. Clearly though, this shows there are on-going collaborative efforts between researchers in the US and in Europe to move towards a better understanding of how CLIPPERS presents in patients.

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.

More blood.

Filled tubes, 9 of them.

So, following on from last time, I finally managed to get my blood sample collected for the Mayo CLIPPERS study. In fact, I had no problem filling all 9 tubes - I have good veins apparently. Hopefully it survived the trip over the Atlantic with FedEx and will contribute in some small way to helping understand more about CLIPPERS. 

Two warts merged into one.

As of the beginning of June, I am over four years since first symptoms and still taking Azathioprine with few side-effects. Apart from occasional blips in liver scores, I have a few warts (7ish) which is apparently quite common on Azathioprine. They are confined to fingers with a few periungual ones for good luck. Not very pleasant, but could be worse - I had them blasted with cryotherapy recently which will hopefully help. That's enough about warts.

Finally, I'm not sure how long this has been live, but CLIPPERS now has a short entry on Radiopaedia (think of Wikipedia, but for doctors)

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.

Blood

A box of stuff.

A bag of tubes.

I realise there's been a bit of a gap between posts recently - sorry about that.  In the interim I received the kit from the Mayo Clinic to allow my blood to be transported half-way round the world within a day or so of being drawn; I never imagined one day my blood would be flying to America. When it arrived, the box was big, very big. However I soon discovered that most of the volume was taken up by the polystyrene container which will hopefully ensure everything arrives intact. There is a little bit of paperwork, but most of it has been filled out already and fortunately, as a non-US citizen, I don't need to fill out the tax declaration. 

As someone who is nearing 4 years since first CLIPPERS symptoms, and has had over 3 years of normal life on Azathioprine, it would be nice to think there was something interesting in my blood. I suspect though, that the key will be to get sufficient patients enrolled that some subtleties start to emerge from the CLIPPERS population as a whole.

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.

Mayo CLIPPERS Study Update

It must be Spring.

A very quick update/reminder about the CLIPPERS study at the Mayo Clinic. I had a very brief email conversation with Dr Tobin about the study recently. He confirmed that they are still actively recruiting and keen to collect data on as many patients as possible. In particular they are committed to tracking recruits at intervals in the future to gather information about outcomes. Treatment effectiveness, susceptibility to relapse and long-term effects of CLIPPERS are some of the big issues they want to study. They are also actively analysing the preliminary volunteer data they have already and will update us about this in due course. So if anyone is interested in finding out more about this study please look on the CLIPPERS repository page for more details.

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.