Wednesday, 10 February 2016

Auto-immune or not?



Recent posts have been few and far between - sorry about that. I hope to up the frequency a little now that small details like getting a new job have been resolved.

CLIPPERS has been proposed as an "autoimmune disease", a view supported by the fact that effective treatment is focussed on immune-suppressing agents such as Prednisolone, Methotrexate and Azathioprine. With this in mind, there have been a couple of recent news-items on the nature and treatment of other auto-immune disorders which are interesting.

One concerns a possible future treatment for early Multiple Sclerosis which involves destroying and then regenerating the patient's immune system. In a recent trial, this treatment reduced auto-immune attacks on myelin - the cause of MS - by up to 75%. This therapy is at a very early stage of research but the fact there has been proof of concept in human trials is very exciting. Having said that, the technique as it stands involved aggressive chemotherapy which is not trivial to administer or tolerate. Whether this research results in some general principles which can translate to other auto-immune disorders is unclear at the moment, but worth keeping an eye on for the future.

The other story has been floating around in various forms for several years, but was recently revisited in a British newspaper ("Why a diet of worms could be good for you", The Guardian, February 2016). The essence of this story is that in the past our bodies were used to the presence of parasitic worms and developed a complex relationship with them. Quoting the doctor from the article, "I can give a mouse multiple sclerosis, rheumatoid arthritis or colitis, and when I give it worms, the disease goes away. Can we do that in humans too? I don’t see why not.” Researchers think that parasitic worms adjust the immune system of the host to dampen it down which could have beneficial results when auto-immune disease is present. However the mechanisms are not understood and there have been virtually no studies in humans. Given the choice in a few years time of immune-system destroying chemo or having a few worms to stay, I know which I would choose. However, please note that I am not a doctor and definitely not advocating treating CLIPPERS using worms.

Read other articles in this series at Living With CLIPPERS.

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Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

Saturday, 2 January 2016

2016

The Round Table (allegedly) in Winchester
Just a quick note to wish everyone who follows this site - or even just visits occasionally - a happy and prosperous 2016. I will endeavour to keep you all updated with any news about CLIPPERS I hear about. As always, if anyone has anything they want to share then please get in touch. Please note that I am changing my preferred email address for the blog to wrcrum@hotmail.com but entries to the old one should still get through.

Read other articles in this series at Living With CLIPPERS.

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Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

Sunday, 29 November 2015

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.

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Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

Saturday, 17 October 2015

One patient's story


This month I was privileged to hear from Keith whose wife Lisa has recently been diagnosed with CLIPPERS. She has had a tough time as she had a much more acute onset of symptoms than I did and suffered several relapses before the CLIPPERS diagnosis enabled her to receive the right treatment regime. Keith has been keeping an on-line journal about his experience which is updated pretty much in real time. You can read their story here (note that the entries are most-recent first). Keith is also keen to find out as much as possible about how best to support a recovering CLIPPERS patient through treatment.

Read other articles in this series at Living With CLIPPERS.

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Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.