Professionals' Q+A: Parkinson's medicine management 2011
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?"
"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."
"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 stiffness?"
"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 questioned."
Adrian, occupational therapist:
"How much of a breakthrough is the drug Cogane perceived to be?"
"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."
"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 candidates?"
"Duodopa is currently available. However, its high cost, limited evidence base, and potential for surgical complications means that it is not routinely commissioned by PCTs."
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 them)?"
"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 unusual.
"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 experiencing freezing.
"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 pramipexole dihydrochloride."
"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 medicines.
"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."
"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 conversions."
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?"
"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 medicine.
"Regarding the drowsiness however, close monitoring is required because if the drowsiness does not wear off then a dose reduction may be warranted."
"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 mobility).
"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?"
"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?"
"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 syndrome.
"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 indicated."
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 marketed?"
"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."
"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 all.
"Are there any alternative medicines or therapies that have been successful in treating Parkinson's that manage the symptoms without compromising the patient's mental and emotional wellbeing?"
"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 saliva."
"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 drowsiness etc.
"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 Drug Tariff."
Timing of medication
"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."
"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."
"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 combination?"
"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
"Hi Paul, is there any evidence that impulse control disorders might be less problematic with certain dopamine agonists or different formulations?"
"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."
"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."
"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 requirements.
"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?"
"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."
"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 Scotland?"
"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?"
"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 delayed."
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?"
"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."