Do I need to take medication? How and when should I take it?
People who develop Parkinson's will most likely need medication for the rest of their lives. Today, the symptoms of the condition can be very effectively relieved and through medication, the dopamine deficiency in the brain is controlled. In the beginning, a single medication or a combination of different medications can be used with medical treatment being started in low doses and increased gradually. Medication is always individual and can vary greatly between people and therefore, medical treatment requires follow-up by a physician with a good knowledge of the condition.
Your doctor will be on hand to advise when to take your medication so that it works best for you, for example before, with or after eating, whether you should take with or without protein etc. By working closely with your doctor, you will be able to find the right balance and combination of medications that will suit you. It is important that you monitor your response to the medication regularly so that medicine remains as effective as possible in managing your symptoms. Again, if you are unsure or do not understand everything the doctor has told you, please ask him/her to explain again as it is important for you to follow the advice you are given accurately.
Some people find that combining medication with conventional therapies such as physiotherapy, occupational therapy and speech and language therapy as well as complementary therapies such as aromatherapy, reflexology, yoga, tai chi and surgical treatments is helpful. But if you are considering these therapies it’s always advisable to discuss with your doctor first.
It’s also worth remembering that as well as the above treatments, changes in your lifestyle can also keep you in good health.
What types of medication are there and how do they work?
There are several different types of anti-Parkinson’s medication and they work in different ways to:
- increase the amount of dopamine that reaches the brain
- stimulate the parts of the brain where dopamine works, or to block the action of other chemicals or enzymes that affect dopamine and reduce its effect.
- The following outlines the types of medications available:
- Levodopa – dopamine is unable to cross the blood-brain barrier and a dopamine replacement treatment, known as levodopa, is administered which then converts to active dopamine in the brain
- Dopamine agonists – these imitate or mimic levodopa’s action by directly stimulating the brain’s dopamine receptors. Although not quite as effective as levodopa, they can provide good symptom control and may delay the onset of motor complications associated with long-term levodopa use
- Catechol-O-Methyl Transferase (COMT) inhibitors - these prolong the effects of levodopa doses by preventing the breakdown of the medication in the brain. The preparations available, entacapone(Comtess®, Comtan®) and tolcapone (Tasmar®) can decrease the length of “off” times and may allow levodopa doses to be reduced.
- Monoamine-oxidase B (MAO-B) inhibitors - these slow the breakdown of dopamine in the brain to produce more sustained effects. Selegiline (Elderpryl®and Zelapar®) and rasagiline(Azilect®) are the medications available and they are recommended for people who experience ‘end of dose’ deterioration when taking levodopa/carbidopa combinations. Rasagiline may also be used on its own in early Parkinson’s
- Anticholinergics – these are older medications that reduce the effects of acetylcholine, a neurotransmitter in relative excess in the brains of people with Parkinson’s due to dopamine depletion. They reduce tremor and rigidity, and can have positive effects on drooling, but have little effect on bradykinesia (slowed ability to start and continue movements). Side-effects, such as memory impairment and other neuropsychiatric complications limit their use, particularly in the elderly
- Dopaminergic - Amantadine is an old medication with weak dopamine agonist effects. It improves mild slowness, tremor and stiffness, and recent research suggests it is effective in treating dyskinesias that result from taking levodopa. It may, however, cause side-effects such as hallucinations, insomnia, ankle swelling and skin mottling.
How soon will my treatment start, how long will it last and will I have to pay?
Treatment will usually start when a diagnosis has been confirmed. In the beginning stages, a single medication or a combination of different medications can be used. Medical treatment is started in low doses and increased gradually.
Once started, medication is generally taken for the rest of your life, with adjustments to the types and dosage as your symptoms alter over time.
Over the past few decades there have been great advances in the effectiveness of anti-Parkinson’s medications and they can provide good symptom control for a number of years. You will need to work closely with your doctor in finding the right balance and combination of medications that will suit you, monitoring your response and their effectiveness all the time in order to maintain good control of your symptoms.
Each country has its own guidelines and policy on the provision of medications so you will need to check with your healthcare professional, social worker or government office responsible for healthcare.
If you have private medical insurance always check with them what cover they provide for medication at any stage of your treatment as this will be dependent on the terms of your individual policy cover.
What symptoms will respond well to medication?
Medications are prescribed to control the symptoms you experience. As each person responds differently to any medication, how effective they will be will depend upon how your body and chemical balance responds.
Some symptoms tend to respond well to particular medications, for example Sinemet and Madopar may help with stiffness and slowness of movement, whilst anticholinergics may improve tremor. You will need to monitor your responses with your doctor to see what works best for you.
If you experience a number of symptoms, your doctor may prescribe more than one medication. Sometimes a medication that improves one symptom may result in another being less well controlled, so by working with your doctor you will be able to achieve a good balance of symptom control throughout the day.
See also Symptoms.
If I cannot take a particular medicine are there others that are equally good?
Some medications interact with others so you should always discuss any change in medication with your doctor so that together you can find a substitute that works for you.
Most medications have two names. One is a generic name that always uses a small letter and describes the active ingredient in the medication, for example co-careldopa. This is likely to be the same name no matter what country you live in. The other is a brand or trade name by which the medication is marketed. This can vary from country to country and always uses a capital letter, for example Sinemet.
See also Types of medication.
What side effects should I be aware of and what can I do to reduce them?
As with any medication, there can be side effects and these may differ from one medication to another. Each person’s reaction to a medication is individual and many experience little or no side-effects.
Each prescribed medication has an information leaflet that outlines possible side effects and it is very important that this leaflet is read prior to taking the medication. If you have any concerns, please ensure that you discuss these with your doctor, health professional or pharmacist as soon as possible so that they can advise or change the medication if necessary.
It is important to follow the instructions you are given for taking each individual medication, as some should be taken in a different way or at a different time of day to another. By following this advice you can minimise side effects. Taking the correct dose is also very important.
See also Managing medication.
Are there any possible long-term effects?
As with any medication, there can be long-term effects, although not every person who takes the medication will experience them. Each medication comes with an information leaflet which outlines possible effects so make sure that you read this. If you have any concerns, please discuss these with your doctor, health professional or pharmacist.
See also Managing medication.
What will happen if I forget to take my medication?
It is important to discuss with your doctor what would happen if you do forget to take your medication so that you are prepared, and understand what action you should take.
If you forget to take your medication you may notice that your symptoms become worse, often known as ‘wearing-off’, as the effects of the medication literally wear off. Symptoms may then either re-emerge or worsen before the next dose of medication is due. This tends to begin to happen over a period of time as Parkinson’s progresses, and when it occurs the control of both motor and non-motor symptoms fluctuates. This phenomenon is very individual and there is no standard time frame for when this may occur or what symptoms you might experience.
The range of ‘wearing-off’ symptoms is very broad so any changes in your usual pattern should be discussed with your doctor as he/she may be able to adjust your medication regime to help control these symptoms better.
What would happen if I try to manage without medication for some time?
Any change to your medication regime must be discussed with your doctor so that you understand how this might affect you.
Parkinson’s medication should never be stopped abruptly as this can be dangerous. If both you and your doctor agree to stop any medication, it will be necessary to do so by very gradually reducing the medication dose.
At this time, it would be useful if you kept a diary to monitor how this was affecting your symptoms. This can help to highlight any changes in symptom pattern, or in your emotions or behaviour that may be related to medication.
Writing down your own individual experiences on a day-to-day basis can also help you to talk about any changes in your symptoms and your feelings with your doctor. This can be very useful, particularly as appointments are often too short for doctors to ask lots of questions, and your visit may be on a day when your symptoms do not follow their general pattern.
See also Keeping a diary.
Apart from taking medication, what else can I do to help myself?
Parkinson’s is a very individual condition and so each person will find their own way of coping and managing their symptoms.
Often a combination of approaches is helpful, but before making any changes it is very important that you discuss with your doctor any proposed changes. You may need to adopt a trial and error approach to find what works best for you.
Conventional and complementary treatments:
- Conventional Therapies, such as physiotherapy, occupational therapy, speech and language therapy
- Complementary therapies, such as aromatherapy, reflexology, yoga and Tai Chi
- Surgical treatments such as Deep brain stimulation (DBS) are also available but are not suitable for everyone and should only be undertaken after very careful consideration and discussion with your doctor.
Changes in lifestyle can also really help, for example diet and nutrition, exercise, and managing stress. Careful planning can be key to organising your day better and saving energy, for example doing several jobs in the same place at once, or doing the most strenuous activities when medication is working well and taking rests when needed. You should also prioritise and decide what activities are most important, and accept your limitations if you cannot achieve all you would wish to do.
Whilst these changes may be very small in the early stages, they can become more significant as the condition progresses. There is no doubt that a positive outlook, with a determination to overcome obstacles, will also help.
Accepting change is an important step in successfully managing your Parkinson’s. It is often challenging at first, it’s frustrating when you are forced to play nine holes of golf instead of a usual 18, or when you have to take a shorter walk than normal. But being able to adapt, for example in your personal relationships, ways in which you travel or spend leisure time, and in your care and nutrition, means you can continue to lead a fulfilling, happy, good quality of life. Having Parkinson’s does not mean everything is over.
It's often useful to see how other patients deal with their own Parkinson's and many of them devise their own strategies for coping with certain difficulties. See Coping strategies for some ideas.
For more helpful hints and tips on everyday living see Helpful hints.
See also Living well.
Can I take other medicines while I take Parkinsons’s medication and how can a pharmacist help?
Many people with Parkinson’s take other medications to treat various unrelated conditions. Because some medications can interact with others, it is very important to tell your doctor or health professional about any other medicines, remedies or supplements you are taking, including over the counter medications that have been bought without a prescription.
Some medications may have harmful interactions with other medications known as contraindications, and may worsen your symptoms or bring on Parkinson’s type symptoms that will disappear if you stop taking that medication. Telling your doctor about other medicines, remedies or supplements you take can help to reduce the risk of contraindications.
Getting the balance of Parkinson’s medications right for each individual is complicated and very important so if you have any concerns about the medication you are taking, you will need to discuss this directly with your doctor who will continue to monitor your medication on a regular basis.
You can also talk to your pharmacist as he or she is qualified to prepare and dispense medicine, and to offer advice on your prescribed medications. Pharmacists are always willing to listen to concerns you may have and try to help if they can, for instance, they should be able to advise about any possible side effects from the medication that you may experience. If your pharmacist cannot help then he or she will refer you to your doctor.
See also Managing medication.
Will I be able to change the timing and dose, or must the doctor decide?
It is very important that you discuss any changes in your medication regime, either in timing or dosage, with your doctor or consultant before making a change.
Remember you are a partnership and should make informed decisions together.
How do I get an ongoing supply and can I obtain medication if I go to other countries?
You will need to discuss with the doctor or specialist who prescribes your medication how you can get an ongoing supply. This will vary according to the country in which you live and the local services available, but usually arrangements are made for repeat prescriptions to be available at a pharmacy which is convenient for you.
Your doctor will also be able to tell you how many weeks supply you can have in advance. Again this varies from country to country so you will need to ask about this.
Not all medications are licensed in every country, and some are known by different names so it is a good idea to check the local names of the medications you use before you travel.
For information on availability at other international destinations it is best to check with your pharmacist, or local Parkinson’s association, the EPDA website contains the contact details for Our members, Other Parkinson’s organisations.
As some medications are difficult to obtain in certain countries, and also in some cases, the quality may not always be of the highest standards, it is best to ensure that you take with you all the medications that you need.
Carrying a few spare with you is always a good idea in case of any delays in your return. It’s also advisable to try and carry a spare prescription with you just in case you do run out of medication while you are away.
If you need to buy a product overseas you should check the ingredients carefully as they can and do contain different substances. For some destinations it may also be wise to check with the country’s local embassy about any regulations concerning your medications. If you need to use a syringe it would be a good idea to check in advance with the airline because of any restrictions they may have.
If you carry a pump for continuous medication you will probably need to take a doctor’s letter with you confirming that this must be kept with you at all times.
For more information and useful suggestions on medication and travel, see Travel and relocating.
What could help me to manage my medication better, e.g. pill dispensers, dosing alarms etc?
If you have a number of different medications to take throughout the day you may find it helpful to use a timer, rather like an alarm clock, which will remind you take another dose.
You can also buy various types of tablet organisers that have a compartment for each day which can be very useful to keep with you if you are going out. For advice on this speak to your pharmacist or look online, for example the Disabled Living Foundation (DLF) website or commercial companies such as Tabtime.
See also Managing medication.
If I go into hospital, what happens about my medication?
It is vital to get the right medication at the right time every time, not just at the set times scheduled for hospital medication rounds, in order for your symptoms to continue to be well managed and to speed up recovery. If admission is as an emergency, this can be more difficult as staff may not have a clear picture of your needs and may be very busy, so it is a good idea to discuss this scenario with those close to you so that they can liaise with staff on your behalf.
For any admission it is essential that staff have clear notes regarding your medication. A medication diary can be very helpful with this, specifying:
- dosage and timing of each medication you have to take, including complementary, trial, non-Parkinson’s medications and over the counter medications
- clear instructions on how each medication should be taken, e.g. with food, with water etc.
Some hospitals will allow you to self-medicate (leave you to take your own medications at the correct times without the intervention of staff) but this is not always the case.
Make sure that you take plenty of each medication with you into hospital as they might not have ready supplies, and ensure that the dosage on the label is what you have indicated on any medications list you provide. If not, staff can sometimes only be authorised to dispense what is written on the label, which could be incorrect.
It is also a good idea to inform staff of any side-effects medications can cause, particularly any “on-off” fluctuations you experience, so that staff realise that you may need help with certain activities when you are “off’’.
See also Hospital admissions.