Transcript 5 years of treatment

AHC and Flunarizine : families point of view
international survey report
Dominique Poncelin
President AFHA (french group of families)
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Why such an survey
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Flunarizine is the most common used drug in AHC
treatment
However very few scientific publications (not on a large
scale) have been published on this specific subject of
effectiveness and side effects for this drug.
 1993: AHC : a study of 10 patients and results of
flunarizine treatment (KSilver- Canada)
 2000: AHC manifestations and long term outcome (44
cases) – (Mikati, USA)
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2001 : Long term effect of flunarizine on 28 patients
with AHC in Japan (MSasaki- Tokyo)
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Methodology
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Questionnaire sent to 94 families (34 North America + 60
Europe)
Main subjects on Flunarizine :
-- age of starting < > 2 years old
-- dosage + taking time in the day
-- effectiveness parents’ report : YES / NO
-- main fields of effectiveness : hemiplegia attacks , others
-- side effects reported
-- experience of a break in flunarizine treatment
60 (64%) questionnaires received (18 North America + 42
Europe)
AHC cases NOT taking flunarizine : 8 (5 « light »)
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Age of start – dosage - taking time
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< 2 years old : 76 %
<5 years of treatment
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>5 years of treatment
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<11 mg: 80% <16 mg:15% <21mg:5%
<11 mg: 68% <16 mg:27% <21mg:5%
Morning:15% evening:25%
half in 2 times:60%
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effectiveness parents’ report
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YES : 60% NO : 25%
??? : 15%
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starting very early without any break
flunarizine effect or other drug or natural course?
Effectiveness on long term
decreasing:40% (after a few years)
Steady:15%
No change:20%
???
:
25%
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main fields of effectiveness
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Less duration of hemiplegic attacks: 100%
Less severity of hemiplegic attacks: 80%
Less frequency of hemiplegic attacks: 62%
Other fields improved:
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Dystonic attacks: 25%
Balance:sporadic
Speech: sporadic
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side effects reported
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YES : 20%
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Tiredness
Appetite
balance
due to flunarizine or progressive course ??
Side effects usually appeared within 1 month
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
YES:
experience of a break
>5 years treatment :30% < 5 years treatment: 10%
 Because of lack of effectiveness
 As a trial to check effectiveness
 After several years of treatment
 Break for more than 1 month
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Increasing of attacks: YES : 75%
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Summary
From the parent’s point of vue :
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Flunarizine is effective for 60% in decreasing
duration + severity of hemiplegic attacks
Dosage needs to be increased (but less than15 mg)
to keep effectiveness during first years
Effectiveness seems to decrease or is “steady” after
a few years
Some side effects are reported; parents think it is
not clear whether it is due to AHC evolution or
flunarizine effect
Some “break trials” have been done usually with
negative effects
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Conclusions
The number of returned filled in questionnaires
(60/94) with a very short deadline (17 days only)
really shows motivation from AHC families (both
Europe and North America) to be helpful in studies
targeting to a better understanding +treatment in
AHC
Main concerns of families:
 What is the « best dosage »
 Are afraid of a break trial to check effectiveness
 Side effects = AHC or Flunarizine?
 Long term consequences on AHC child/adult
developpement
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Conclusion
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In terms on flunarizine effectiveness, side effects,
break experience, results may be cross checked with
the analysis of the european and american registry
Then, according to results and tendencies,
international scientific study with the participation of
groups of AHC families may be (or not) decided.
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