The most important CLIPPERS paper of the year so far has just appeared. It's called "Long-Term Outcomes of CLIPPERS in a Consecutive Series of 12 Patients" by Dr Taieb and colleagues. I haven't had time to digest this paper properly as it is quite involved (and I'm not a doctor) but some very brief points from a first reading.
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(As usual, please note I'm not a doctor so don't take this as gospel.)
The paper focuses on the pattern of relapses in 12 people diagnosed with CLIPPERS, treated with cortico-steroids and followed over months or years. Dr Taieb says that "Secondary progression was not observed" - in Multiple Sclerosis secondary progression means "sustained build up of disability, independent of any relapses". So this study suggests that there isn't an underlying disease process continuing to cause damage after symptoms have been treated with cortico-steroids. This is good news.
Relapses
Patients who remained on steroid doses at 20mg/day or higher tended not to get relapses but patients who did get relapses continued to respond to repeated high doses of steroids. Dr Taieb found that early treatment of relapses was important to prevent worsening of symptoms during the relapse or continuing problems. So I guess it's good news that CLIPPERS remains treatable but not so good news that it can return after the first episode. We have to remember though that this is still only 12 patients so this paper represents an important step along the way rather than a definitive study.
Still Missing
One important missing piece of the puzzle is the effectiveness of alternative immunosuppressant therapy. Three of the patients described by Dr Taieb were moved on to Cyclophosphamide and one on to anti-CD20 (Rituximab) treatment with one subsequently relapsing. Of particular interest from my point of view is that there is no data on the long-term effectiveness of Azathioprine although there is some existing evidence (from other smaller studies) that Methotrexate can be effective.
I Am An Experiment
Relapses
Patients who remained on steroid doses at 20mg/day or higher tended not to get relapses but patients who did get relapses continued to respond to repeated high doses of steroids. Dr Taieb found that early treatment of relapses was important to prevent worsening of symptoms during the relapse or continuing problems. So I guess it's good news that CLIPPERS remains treatable but not so good news that it can return after the first episode. We have to remember though that this is still only 12 patients so this paper represents an important step along the way rather than a definitive study.
Still Missing
One important missing piece of the puzzle is the effectiveness of alternative immunosuppressant therapy. Three of the patients described by Dr Taieb were moved on to Cyclophosphamide and one on to anti-CD20 (Rituximab) treatment with one subsequently relapsing. Of particular interest from my point of view is that there is no data on the long-term effectiveness of Azathioprine although there is some existing evidence (from other smaller studies) that Methotrexate can be effective.
I Am An Experiment
I have been on < 20mg Prednisolone / day since November 2011 and since June 2012 I have been taking only Azathioprine and am still well. So I guess we'll see what happens ....
Read other articles in this series at Living With CLIPPERS.
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.
