Below is a list of medicines that doctors may sometimes prescribe to treat specific symptoms of PWS (available in NZ as stated, Oct 2017). This is not a comprehensive list as there may be preferred alternatives or other medicines available. Please note the following warnings:
• Some classes of medication (SSRI’s and anti-psychotics/neuroleptics) are more likely to have side effects at standard doses, possibly due to individual drug metabolism differences in PWS.
• The effects of a keto diet or the increased risk for disrupted temperature regulation or hyperglycaemia /diabetes mellitus in PWS should be considered with some medications.
• From PWSA USA Medical Coordinator: Medication Combinations May Fatally Impair Breathing in PWS
“We know that people with PWS often absorb and keep medications in their system longer than the average person. The medications of greatest concern include prescription pain medications, anaesthetics, and psychotropic medications, all of which have the potential to depress breathing in any person. Combinations of several new medications create the most worrisome situation and is most likely to occur after surgery.”
Fluoxetine hydrochloride (Arrow-Fluoxetine / PROZAC®)
Fluoxetine belongs to a group of medicines called selective serotonin re-uptake inhibitors (SSRIs) which are used in the general population to treat depression, anxiety and OCD. They are mainly prescribed to adults but may be used for children. In PWS, fluoxetine is often prescribed for reducing anxiety and stabilising behaviour. It can be very effective in low doses, but does not work for everyone and there may be unwanted side effects or a worsening of specific symptoms. Some people with PWS are prone to mood activation with SSRIs. Sometimes initial response may be good but negative effects can be experienced with dose changes. It has also been reported that SSRIs have not been helpful for skin-picking and food preoccupation in PWS. Some other SSRIs used in PWS and available in NZ are Sertraline (brand name Zoloft may be used overseas) and Citalopram (brand name Celexa may be used overseas.)
Melatonin modified-release (CIRCADIN®)
Melatonin may be prescribed to children under 18 years by Special Authority for insomnia secondary to a neurodevelopmental disorder (including, but not limited to, autism spectrum disorder or attention deficit hyperactivity disorder) when behavioural and environmental approaches have been unsuccessfully tried. For some children with PWS, Melatonin may improve sleep quality and help with early waking.
Methylphenidate hydrochloride (RITALIN® / Rubifen / and SR sustained-release)
Methylphenidate is a stimulant medication that may be prescribed by Special Authority to children and adults for narcolepsy (sleep disorder) or ADHD in immediate release or sustained release form. In PWS stimulants can improve impulsivity, focus and attention, but the effects differ for individuals and are dose dependent. Stimulants may also negatively affect perseveration, OCD, anxiety and tics. Additional medications may be needed to find balance. Stimulants are not recommended if patients have pre-existing or are at high risk of developing psychosis, suicidal tendencies or bipolar disorder.
Methylphenidate hydrochloride extended-release (CONCERTA® / RITALIN® LA)
Methylphenidate extended-release is a stimulant medication that may be prescribed by Special Authority for ADHD only, but one of the above formulations need to have been tried first and found to be ineffective. Extended-release formulations are often preferred for easier administration. Anecdotally, some families report good success with Concerta for improving focus and attention. As with all stimulants, effects differ, they are dose dependent, other medications may be needed to find balance and they are not recommended for some patients.
Dexamfetamine is a stimulant medication that may be prescribed by Special Authority to children and adults for narcolepsy or ADHD. (Note: Adderall is a similar brand available overseas.) See the information above regarding stimulants.
Modafinil acts on the central nervous system to promote wakefulness. It may be prescribed by Special Authority for EDS (excessive daytime sleepiness) and narcolepsy, but Methylphenidate or Dexamphetamine needs to have been trialled first. Anecdotally, Modafinil has been very successful for some patients with PWS, but if the dose is too high, anxiety, perseveration or tics may increase and PWS patients may also be prone to negative effects on mood. (Note: brand name Provigil may be used overseas.)
Risperidone (Actavis / RISPERDAL®)
Risperidone belongs to a group of medicines called anti-psychotics which should be used with particular caution in PWS. Risperidone is different to other anti-psychotics because in addition to being used to treat schizophrenia, other psychotic disorders and bipolar disorder, risperidone is also indicated for conduct and disruptive behaviour disorders in children, and for adults with intellectual disability for whom destructive behaviour is prominent. Therefore, risperidone is often successful in treating severe problem behaviours in PWS, but it does not work for everyone. An unfortunate side effect is weight gain. If negative side effects are experienced or there is an inadequate response, Aripiprazole (ABILIFY™) has a reduced likelihood to cause weight gain and may be prescribed by Special Authority to patients with a diagnosis of ASD or schizophrenia or related psychoses. There is limited research on the use of psychiatric medications in PWS but it has been suggested that antidepressants and antipsychotic medication may be more effective than mood-stabilizing medication, however, more recent reports warn that anti-psychotics can cause mood activation in PWS. A small case study noted that risperidone had promising treatment effects for psychotic symptoms, mainly associated with uniparental disomy (UPD).
Haloperidol is another anti-psychotic medication which can be prescribed from 12 years for manic depressive illness and the management of symptoms of psychotic disorders such as schizophrenia or psychosis. It is thought to be sometimes effective for PWS patients, but anti-psychotics should be used with particular caution in PWS patients. Haloperidol is also classed as a ‘first generation’ or typical antipsychotic and is infrequently used today due to this group having more side effects, particularly affecting motor function. ‘Second generation’ antipsychotics such as risperidone are more or less exclusively used in PWS and are referred to as atypical.
Olanzapine is an atypical anti-psychotic medication for adults which is prescribed for the treatment of schizophrenia and related psychoses, and for the treatment of manic or depressive episodes associated with bipolar disorder. It is thought that Olanzapine may be effective for PWS patients, but like all anti-psychotics, it should be used with particular caution in PWS. There have also been reported cases of prolonged hypothermia associated with this medication and PWS.
Topirimate is indicated by Medsafe NZ for the control of epilepsy in adults and children. However, low dose Topirimate has been successful in treating self injury (skin picking) and impulsive/aggressive behaviours in PWS. There are even case study reports of Topiramate reducing food seeking behaviours in some patients. However, Topirimate and some anti-psychotic medications are known to exacerbate osteoporosis (associated with PWS.) In recent years N-acetyl cysteine has become a widely used and often successful alternative treatment for skin picking, particularly in the form of the supplement ‘PharmaNAC’. (Read more on our supplements page.)
A new type of service has become available overseas using pharmacogenomics to find an appropriate individual treatment without the need to trial lots of medications first. This type of genetic testing to tailor medication and dosage to the individual is not yet available in New Zealand, but we hope it will be in the future! Check out www.genomind.com, www.genesight.com, www.genelex.com and www.pathway.com