Professionals' Q&A: Medicine management for Parkinson's
Paul Hughes joined us in November 2011 to answer questions
from healthcare professionals and others about the choice of
drug treatments for Parkinson's. He also
welcomed questions about how clinical commissioning might affect
medicine management in the future.
Paul is one of the Deputy Heads of Prescribing and Medicines
Management for NHS Cornwall and Isles of Scilly. He has a
postgraduate qualification in the enhanced management of Parkinson's.
The answers below are Paul's professional opinion.
Parkinson's UK: For information about any of the Parkinson's
drugs mentioned below, please take a look at our pages on drug treatments for Parkinson's.
Sachin, family member of somebody with Parkinson's: My
father is having mild parkinsonism. He is taking syndopa daily
twice a day. Till how long will syndopa be effective?
Paul: This depends very much on the individual's condition, but
one would normally expect to see beneficial effects within 2 to 3
weeks of initiation of levodopa therapy. This assumes the dose has
been carefully titrated upwards to achieve a response.
Parkinson's UK: Syndopa is the generic name of a type of
levodopa, one of the main drugs
used to treat Parkinson's symptoms.
Dr T, doctor: Does lack of response to the antiparkinson's drug
syndopa mean that the patient does not have Parkinson's? If yes,
how long should one wait to see the response to tremor and
Paul: Not always. It may mean that the optimum dose for the
patient has not been reached. Also, tremor can be one of the most
difficult symptoms to control. That said however, a patient should
always be referred to the specialist if the initial diagnosis is
Adrian, occupational therapist: How much of a breakthrough
is the drug Cogane perceived to be?
Paul: There have been some promising results for Cogane in the
pre-clinical trials in animal subjects. The CONFIDENT-PD study, now recruiting,
should demonstrate if this drug has potential in humans.
Rachel, physiotherapist: I have heard about Duodopa and wondered
whether this is likely to become readily available. Will there be
criteria for its use, if so which patients will make likely
Paul: Duodopa is currently available.
However, its high cost, limited evidence base, and potential for
surgical complications means that it is not routinely commissioned
Theresa, wife of somebody with Parkinson's: My husband (65 years)
has had Parkinson's for 4 years. Last year no medication then 3
Sinemet for 2 years and now 4 Sinemet daily. Tremors almost
continuous (are there meds for tremors?). Sometimes his leg freezes
till he starts walking again, then it's OK.
What is the future for Parkinson's patients and do you
think he is on the right medications (neurologist prescribed
Paul: Parkinson's is progressive and requires medication
regimens that are tailored to the individual patient. These usually
get more complex as time goes on so what you describe is not
The tremor can be very difficult to control completely but can
be worse when a patient is anxious, and/or where there is 'wearing
off' of a dose prior to the next dose being due. It sounds like
your husband needs a clinical review especially if he is
I would like to think that there will be a significant
breakthrough in the treatment of Parkinson's in the future, but in
the meantime patients rely on a multidisciplinary approach to care
and good optimisation of their medication.
Kathy, person with Parkinson's: Is there any problem if I would
happen to take a double dose of my meds? Sometimes I forget if have
taken them and take another one. Also, what effect does alcohol
have on meds? I take carbidopa, levodopa, selegiline and
Paul: If you are having trouble remembering to take your
medicines, I would suggest you speak with your friendly community
pharmacist to see what help they can offer. They are obliged to
provide support and assistance to patients to help them take their
Taking more medication than you require puts you at risk of side
effects so a system that helps you remember whether you have taken
one will be helpful.
Alcohol does increase the risk of drowsiness, and poor
co-ordination, neither of which are desirable in people with
Parkinson's. I would be specifically concerned about the increased
risk of falling.
Karen, neurology pharmacist: Do you have a standard method to
convert oral medication to patch or injection for patients that are
on nil by mouth? I am concerned that doctors tend to use low dose
2mg/4mg patches which may not provide sufficient cover for patients
on high doses of oral medication.
Paul: If you have access to the BMJ, there is a very useful
article called 'Managing Parkinson's
disease during Surgery' (BMJ, 1 November 2010) . This should
give you the information you need including some approximate dose
Gillian, Parkinson's nurse: I have a patient who commenced
Ebixa 2 weeks ago to control hallucinations. The hallucinations
have improved but he is now experiencing daytime sleepiness. Is
this side effect likely to reduce over time or should he be advised
to reduce the dose?
Paul: I'm not familiar with the use of Ebixa for the treatment
of hallucinations. Ebixa (memantine) is licensed in the UK for the
treatment of patients with moderate to severe Alzheimer's disease.
Indeed hallucinations can actually be a side effect of this
Regarding the drowsiness however, close monitoring is required
because if the drowsiness does not wear off then a dose reduction
may be warranted.
Annie, physiotherapist: I am a physio and we are often asked by
consultants to assess changes in mobility/function of patients for
whom Parkinson's medications are being titrated. We utilise the
Lindop scale (a fairly lengthy scale monitoring bed and gait
Some consultants prefer a pre-meds/post-meds Lindop
measure - we would therefore do the Lindop twice a day as the meds
wear off; others say the Parkinson’s medications improve function
in a cumulative fashion so we would just do the Lindop once each
patient visit at a similar time.
The mechanisms of different medications vary and I
recognise this. However, have you any thoughts on efficacy of these
drugs on function for patients with Parkinson's? Also, is the
effect cumulative over time?
Paul: Antiparkinsonian drugs can be very effective on functional
mobility, especially levodopa which remains the gold standard of
therapy. Most patients find that after several weeks their mobility
improves. However the degree of any cumulative effect will depend
very much on an individual patient's Parkinson's.
The Lindop Parkinson's Assessment
Scale is a useful tool but like any scale can be affected by a
patient's level of mobility at the time of the visit. Sometimes you
just need to gauge from the patient how they are feeling and
whether or not they (or their family) have noticed an improvement
as sometimes any beneficial effects can be quite subtle.
Alison, Parkinson's nurse: What antidepressant do you consider when
a patient is on rasagiline?
Paul: The Summary of Product Characteristics for Azilect states that apart from fluoxetine and
fluvoxamine, out of 115 patients in the clinical trials on numerous
antidepressants (tricyclics, SSRIs) there were no cases of
serotonin syndrome, although a number of cases have been reported
in post marketing surveillance.
I remain unconvinced that co-administration is completely safe
and 115 patients isn't a large enough number to make decisions on.
Any trial of an antidepressant (apart from the two above which
should be avoided) in an individual patient should therefore be
conducted with caution. The patient should be aware of the need to
report any symptoms associated with potential serotonin
An alternative approach if the Azilect is being used as
monotherapy would be to consider switching to either levodopa or a
dopamine agonist if co-administration with an antidepressant is
Andrew, Emeritus fellow: What do you know about the use, value and
availability of slow-release levodopa - used alone and together
with other medication? When is it expected to be
Paul: I am not aware of any new research into slow release
levodopa preparations. These have been available for many years
(Madopar CR, Sinemet CR) but they have only have a limited place in
therapy due to their unpredictable absorption etc.
Beth, relative: My father had Parkinson's and was prescribed a
number of drugs, but he used to stash them behind the sofa
pretending he had taken them because they made him feel very
drugged and numb.
My mother needed him to take them to make life easier
for her, otherwise he would be up and down all night doing bizarre
things (he suffered from Alzheimer's and depression too), but I
felt very sad about the poor quality of life he had in those final
months and wondered if the drugs actually benefitted him at
Are there any alternative medicines or therapies that
have been successful in treating Parkinson's that manage the
symptoms without compromising the the patient's mental and
Paul: When prescribed appropriately and monitored, medicines for
Parkinson's can be very effective in controlling the motor and
non-motor symptoms. In fact, research has now demonstrated that it
is the non-motor symptoms that have the greatest adverse effects on
quality of life.
These medicines do however have side effects that need
addressing if they occur, and your father's case highlights just
how important this is.
Sarah, speech and language therapist: Several of my
clients experience excess saliva and drooling, despite using
strategies to improve posture and encourage more frequent
swallowing. Have you experience of effective management of excess
saliva? I understand that hyoscine patches are sometimes effective
but they can at times also leave an individual with too little
Paul: If hyoscine is inappropriate then glycopyrronium may be
worth considering. It is long acting but less likely to cross the
blood brain barrier and result in central adverse effects such as
Oral glycopyrronium formulated as a liquid or tablets is
available as an unlicensed special but these are expensive and the
evidence base is limited. A 100ml bottle of 1mg/5ml solution is
£165 in the November
Timing of medication
Carole, pharmacist: One of my patients takes ReQuip XL
and would like some advice about altering the timing of his
medication (due to time differences) when he travels to Australia
and New Zealand on holiday.
Paul: This can be a difficult issue, and there is no solution
that will suit all patients, especially as a change in day-to-day
routine and/or diet can significantly affect an individual's
Parkinson's control. I would suggest that he has a discussion with
his nurse specialist about his own particular therapeutic
requirements. Altering the timing of a once daily medication
regimen can be especially difficult.
Parkinson's UK: Take a look at our International travel and Parkinson's information
sheet for more information on this subject.
Samantha, speech and language therapist: What would be the safest
time, in terms of the effect of medications on dysphagia/swallow
safety, for a patient to eat after taking medication?
For example, if a patient took their medication at 11am,
what would be the best time for them to eat lunch, and how long
after taking medication would you expect to see someone's swallow
deteriorate, or is this individual to each person/drug
Paul: I don't think there is a definite time scale in terms of
safety, and every patient will be different. Obviously if a
patient's swallow significantly improves after a dose of
antiparkinsonian medicine, then that will be the safest time for
them to eat. Otherwise it would be worth considering different drug
delivery methods, eg rotigotine patches.
Impulsive and compulsive behaviour
Shelley, pharmacist: Hi Paul, is there any evidence that
impulse control disorders might be less problematic with certain
dopamine agonists or different formulations?
Paul: All the evidence I’m aware of suggests that impulse
control disorders are a class effect of dopamine agonists,
therefore all need to be used with caution.
Parkinson's UK: See our pages on Parkinson's drugs and impulsive and compulsive
behaviour for more information on this subject.
Denise, Parkinson's UK influence and service development
officer: What more can be done to influence hospitals to allow self
medication? So many people are still missed off drug rounds, surely
this is the way forward. Some hospitals have a self medication
policy but do not enforce it.
I am very active in delivering the messages of the
Get It On Time campaign (in
collaboration with the Parkinson's nurse) and wonder if there is
anything else you can suggest.
Paul: Many hospitals now have wards where patients can self
medicate, however individual trusts need to assure themselves that
self medication is safe and fulfils any local medicines governance
Going forward hospitals will need to consider Outcome 9 of the
Care Quality Commission (CQC) Provider Compliance Assessment
Tool. This relates to medicines management and the need to
ensure that patients will have their medicines at the time they
need them, and in a safe way.
Dorothy, consultant geriatric medicine: What is the
impact for patients and the issues for commissioners of the
increasing range of generic Parkinson's medications?
Paul: Many generic medicines that become significantly less
expensive for the NHS are attractive to commissioners because of
the savings that they can offer, and quite rightly so.
There are a number of generic versions now of several of the
Parkinson's medicines currently available in the UK, and the vast
majority of patients should not notice any differences if switching
takes place. That said, different manufacturers may use different
excipients with the tablets or capsules, and occasionally a patient
will not tolerate a product.
Rest assured, however, that even generic products are subject to
strict quality control procedures and the reduced prices do not in
any way suggest they are inferior. We advise our pharmacies that if
a generic version is supplied where a patient has been used to a
specific brand, to take a few minutes to identify the new medicine
and give some reassurances that it should have the same effect as
their original brand.
Lucy, Parkinson's UK influence and service development officer:
Paul maybe I’m living in dreamland… but why is it that each
hospital Trust has different drug charts? Would it not save the NHS
a lot of money if all Trusts had the same chart so that
pharmacists, nurses and doctors were immediately familiar with the
drug charts whatever Trust/hospital they worked in? It would
certainly make it easier when staff move jobs.
Paul: Different drug charts reflect the different settings of
care in which they are used. Length of expected patient stay also
has to be considered.
Lorna, locum pharmacist: Is Parkinson's suitable to be included in
the Chronic Medication Service about to be implemented in
Paul: I would deduce from the documentation on the web that
Parkinson’s would be included in the
Chronic Medication Service in Scotland as it would be classed
as a chronic condition.
Kecia, Parkinson's UK influence and service development officer:
What kind of proof could we supply to hospitals that improving
Parkinson's medication management leads to lower costs, so that
hospitals are keen to address the issue?
Paul: In terms of direct evidence, this would be very difficult
to evaluate, however people with Parkinson's still get admitted to
hospitals for potentially avoidable reasons - falls, urinary tract
infections (UTIs), psychiatric symptoms, mobility issues, etc.
There is evidence to suggest that people with Parkinson's do end up
having a longer hospital stay, however.
In hospitals there is ongoing work to ensure that patients get
the medication they need, and at the appropriate times, but the
added benefit of this would be that discharge would not be
Fiona, pharmacist - neurosciences: I'd like to ask Paul about his
role in the Parkinson's clinic and how this model has evolved. How
has it been evaluated and do you think this is a model that could
be reproduced successfully elsewhere?
Paul: My clinic was set up to mirror an existing arrangement
that had already been running for several years in the other end of
the county. Pharmacists with additional clinical training in
Parkinson's management were seen to be able to offer enhanced
advice around medicines management and optimisation.
The model has only been evaluated qualitatively using patient
questionnaires, which have been very positive. The model is
reproducible, but relies on pharmacists having additional training
in Parkinson's management, consultation skills, etc.
Information for healthcare professionals