APANA want to
encourage discussion of the pros and cons of using risperidone,
IF YOU HAVE EXPERIENCE OF ITS
USE EITHER PERSONALLY OR IN SOMEONE YOU CARE FOR WE WOULD
BE VERY INTERESTED IN HEARING ABOUT IT. |
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| The paragraph reproduced below is from
the British Medical Journal
of 19 May 2004. It is part
of a wider article on pharmaceutical companies' marketing
strategies. You can read the whole article:
"Whistleblower removed from job for talking to
the press", online by clicking here
: |
| "One of the recommended drugs
was Janssen's antipsychotic medicine
risperidone (Risperdal)-a drug that has recently been
found to have
potentially lethal side effects. The Food and Drug Administration
issued a
warning letter to Janssen on 27 April saying that Janssen's
"Dear Healthcare
Provider" letter about risperidone was "false
or misleading" because it
failed to disclose or minimised risks of the drug relating
to "serious
adverse events including ketoacidosis, hyperosmolar
coma, and death." |
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A systemic review of the use of
atypical antipsychotics in autism.
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Risperidone's pharmacologic icon,
portraying a qualtitative consensus of current
thinking about the binding properties of this
drug… As with all atypical antipsychotics
discussed in this volume [Stahl 2000] binding
properties vary greatly with technique and species
and from one laboratory to another.
Icon and description from
Essential Psychopharmacology.
Stahl, 20 |
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Conventional antipsychotic medication is commonly prescribed
to patients with autistic spectrum disorder. However,
a high incidence of severe adverse reactions highlights
the need to find more favourable treatments. Atypical
antipsychotics may combine efficacy in ameliorating
some autistic symptoms with a lower incidence of some
adverse reactions. This article reviews the use of atypical
antipsychotics in autistic disorder, with particular
focus on behaviour, cognition and physical well-being.
Thirteen studies using risperidone, three using olanzapine,
one using clozapine, one using amisulpride and one using
quetiapine were identified. Few firm conclusions can
be drawn due to the limitations of the studies; however,
there is an indication that risperidone may be effective
in reducing hyperactivity, aggression and repetitive
behaviours, often without inducing severe adverse reactions.
Olanzapine and clozapine may also be effective; however,
there is little evidence for using amisulpride or quetiapine
in this population. Randomized trials are required to
clarify the effectiveness of these agents.
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| Barnard L, Young AH, Pearson
J, Geddes J, O'Brien G. Journal of Psychopharmacology
2002 Mar 16 (1) 93-101. |
| Word of mouth strongly
suggests that risperidone is becoming more and more popular
as a drug for people on the autism spectrum of all ages
and abilities. At extremely low doses, its use is even
endorsed by some people with autism, such as Donna Williams
(see below). |
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| Dr Steve Hinder, a specialist psychiatrist
in this field based in the West Midlands here in the UK,
has given us permission to quote him on this topic (August
2002): |
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"I've been prescribing Risperidone with great success
for about 2 ½ years… Approx 40 adults and
20 children, all with ASD and a learning disability.
There have actually been about 20 papers published,
but only one randomised controlled trial. It was initially
just used for aggression or severe self-injury, in more
disabled clients, and seemed to have a remarkable calming
effect without sedation. Later papers broadened out
to Asperger's syndrome, and consistently reported an
apparent improvement in core autistic features. I have
found this as well. So far, perhaps 70% have shown a
big reduction in difficult behaviours. Of my 60 people,
perhaps 25 have shown a dramatic change… more sociable,
communicative, engaged (carers most frequent comment
is "much more with it and alert") 24 have
shown a similar mild response, and no response in perhaps
10. I use doses of ¼ to 1mg as higher doses often
cause side effects without any further gain. Doses used
in shizophrenia are 6-8mg. At lower doses, it may work
on serotonin (5HT-2) rather than dopamine, but as other
atypical antipsychotics do not seem to have the same
effect, there may be a unique action. Weight gain is
a big problem, as is raised prolactin, but otherwise
I feel [at these low levels] it is safe for longterm
use" (personal communication, August 2002).
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| Here is a report from Donna Williams,
after she had been taking risperidone for a few weeks,
quoted with her permission. (Exposure anxiety is described
in detail in her book of that name, published by Jessica
Kingsley, 2003) |
My recent experience is that the 0.5mg Risperidone stopped
the narcotic
like effect of adrenaline addiction and that was philosophically
hard for me (and I, unlike many of the doctors who prescribe
drugs, KNOW
this drug won't work for all people with the same label
because we are all
different). I was addicted to my own chemistry through
inheriting this
tendency toward neurotransmitter imbalance, growing up
in an environment
which exacerbated it through the life threatening behaviours
of two parents
with the same problems, reinforced it with the drug like
highs of food
intolerances and allergy (possibly built up by the effects
on the gut/immune
system/myaligia of chronic stress of adrenaline addiction
in infancy),
reinforced it through extreme manic buzz-seeking behavioural
highs and then
when my system had collapsed from it into chronic fatigue
I had little good
health to support myself to recover. I removed myself
from the family and
progressively sought a safe life, I sorted my diet, addressed
the gut/immune
system and toxicity issues, took what I could to reduce
the myalgia and its
effect on gut inflammation and inflammation of the blood
brain barrier, even
tried to behaviourally no longer seek the manic oblivion
I had chased all my
life, took supplements to counter the impact of severe
chronic stress,
promoted aspects of personality which helped me live with
and counter my
state, asked for help to wake up and understand, got hypnotherapy,
environmentally reduced overload- all of these good things
and invaluable
groundwork. I took away all but the original inheritance.
all Risperidone
did was finally take away the narcotic effect of the constant
nagging call
and attempts to re-instate the adrenaline addiction state
and with it the
despairing state of Exposure Anxiety with its chronic
avoidance, diversion,
retaliation responses effected so much of every day life
others take for
granted.
So far it has also added to the effect
of a nutritional approach
in freeing up processing space (which is just energy
not being diverted by
chronic Exposure Anxiety and the impact on nutrients)
and the chronic
fatigue has been absent so far. I'm hoping that progressively
the
complications to health of severe chronic stress will
also come down and I
have two cousins with Crohn's, one with severe Crohn's
who has this
adrenaline-addiction state and cannot relax or sit still,
the other with
mild manageable Crohn's who does not so I'll get feedback
on that if I can
too. Genetic testing found that Myalgia runs in my family
(the inflammatory
response which causes inflammation of membranes effecting
the gut, liver,
pancreas, the blood brain barrier etc) and it is always
possible that when
adrenaline addiction combines with myalgia, the impact
on gut/immune
problems is immense. The key is finding out what is
pushing that button.
That trigger will be different for different people.
No drug is a good drug but chronic stress
has the greatest side effects of
all and if a person has worked for years in increasing
adrenaline addiction,
it is like a drug that is hard to wean off. In one person
adrenaline
addiction can mean severe chronic exposure anxiety,
in someone else, an
addiction to violence, in someone else the compulsion
to persistently engage
in life threatening behaviours, in someone else chronic
phobia or worry to
the point of overcontrolling and destroying the lives
of others. I'm just
glad there was something to help me get off my own addiction
to my own
chemical extremes with adrenaline because a vision of
life with Exposure
Anxiety challenging every need and desire for the loo,
for a drink, to eat,
to go out, to get a coat, to show closeness is not psychologically,
emotionally nor physically easy. Its like fighting the
tide every day. It
has so shaped who I have become but boy did i deserve
a rest. In the end,
had i not kicked this beast, i'd perhaps be more likely
join the queue of
cancer cases in my family for that is one of the side
effects of an
exhausted adrenal system and chronic stress.
None of us are a label, we are people.
Many people are abused with prescription drugs because
of a label and it should never be so. Either a drug
works and helps and makes life better or it does not.
Nobody should be sentenced to a drug. Each day I make
that decision anew. I make no permanent commitments.
I just decide each day. I do not feel less of me, only
more of me. Nobody should continue with a drug that
makes them less able to function or be a whole self.
Nor are drugs or anything for that matter 'the only
answer'. In a busy world and a lazy world, it is too
easy for people to think a pill is the answer. It can
only ever be part of the answer for we are whole and
multi-faceted people. I cannot close my mind or heart
to anything.
I don't want everyone to race out and
try what I try, whatever that may be,
for they are not me and as you'll see above, I already
did all the essential
groundwork. We are all too different and diverse to
charge that there are
only absolute right or wrong ways. I say only if it
works, keep it, if it
doesn't, don't follow any kind of dogmatism when there
are other
possibilities which might stand a better chance and
always be open to the
understanding that as multifaceted and multilayer human
beings, the answers
are often mutlifaceted and multilayer too and there
is no one magic wand.
Each person has to find the combination of what makes
up the building of
their own magic wand. Mine may not fit someone else.
take care...
Donna
ps: as for weight gain as a side-effect of Risperidone,
being free of compulsion and chronic anxiety my gut
doesn't feel gripped all the time. I feel free and have
got a bigger appetite. interestingly, i don't know if
this is a side effect or if this would be normal in
anyone who had come out of the kind of cocaine-like
state of adrenaline addiction (which inhibits appetite
except perhaps for that which feeds the adrenaline high
and causes craving). what was so before was that eating
was hard and concentration was harder (of course craving
salicylate high foods was another matter). Apparently,
to want to peck at food between meals is normal in most
people. its a matter of being sensible in the choices
of what to peck at so that weight gain is avoided. Also
there has to be the opportunity for exercise which is
so often lost in society today, particularly to those
living in institutions where such opportunities are
too often limited.
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