Getting the Most From Your Parkinson's Medication
Last updated: June 2022
Most of us who live with a chronic illness like Parkinson’s know firsthand what a struggle it is to find the right combination of medication.
It seems once we do, we are very hesitant to try new things even when our symptoms worsen or demand changes.
Other times, we don’t want or are scared to rely on medications or experience possible side effects such as the dreaded dyskinesias.
What is medication adherance?
According to an issue of USPharmacist, a team of Carolina pharmacists reported an estimated 50 percent of people living with a chronic disease either don’t take their medication as prescribed or don’t take it at all.1
This includes people who go off their medication or take it inconsistently from reasons as varied as side effects, price of drugs, inconvenience or even simple forgetfulness.
The issue of ‘medical compliance’ is one that I, as a patient and retired physician, always take and took into consideration when prescribing or choosing a medication - because let’s face it we still have lives to live despite having a chronic illness.
What makes it challenging?
Yet, the more complex our illness becomes or the more times we have to take our medications during the day, the harder it is to keep track and remember. Compliance becomes an issue even when we don't intend it to be.
I often forget those medications not associated with meals especially when doing things out of my routine like traveling, so I have to be extra diligent in finding ways to ensure I take my medicines as prescribed. This means carrying my medicines with me at all times in a handy pill box.
A loss in routine makes things harder to track causing many times for patients to become poorly controlled or experience more adverse effects.
Tips to improve adherance
In my personal experience dealing with patients and my own illness, medication adherence is in essence much more important in patient outcomes than the specific treatment for Parkinson's alone.
The bottom line is, the easier and more convenient it is to take medications, the greater the likelihood of being compliant. Thus, the better chance for medications to do what they are supposed to do, ultimately making patients’ lives better. The odds of strengthening your well-being increase once you figure out what works best for you.
Consider timing of medications
Synching your medication intake with your lifestyle is a common challenge often not taken into account by many physicians or patients. Often times, we are prescribed medications at bedtime for sleep.
But before you use one, you should take into account your social activities, responsibilities, and lifestyle. At times, we have to adjust the schedule of our medications depending on our circumstances such as staying at home vs traveling.
For instance, my sleeping pill, Lunesta (eszopiclone), takes about 2-3 hours to kick in but then I have to make sure I sleep a full 8 hours. Otherwise, I won’t function well cognitively the following day. So I often have to adjust my dosing schedule accordingly.
This means that while I was driving my daughter to school at 6 a.m., I had to take my sleeping pill at 6 p.m. in the evening to fall asleep by 9 p.m. and be able to wake up unimpaired.
Many patients are simply terrified of side effects, like as I said before, the dreaded "D" word. This fear can paralyze people and prevent them from going on much-needed medication. The inability to tolerate meds may lead many others to go off meds.
The constant trying of new medications to find the "right" one can lead patients and loved ones frustrated and frequently opting for no care, inadequate care, or doctor-hopping.
Be patient with medication changes
People naturally vary in their reactions to medications. In my personal experience, women especially seem to be more susceptible to medication changes and side effects.
I am a prime example of this. Being a specialist I know firsthand the profile of each medication. Yet, any small change in dose or regimen can cause me much distress.
I understand firsthand the frustration and the weariness of trying new things as well as the hesitation. However, I too know that unless you try you won't find the best combination that allows you to live your life to the fullest.
This may take some time especially if you have lived with the illness for a while. So, don't be in too much of a hurry but know there is light at the end of the tunnel.
Be open to new combinations
Standard treatments do require individualization. One drug or dose not fit all. Don’t be afraid to try new combinations with previously taken drugs. Keep in mind that sometimes, the combination is the problem, not a particular drug - I have learned this firsthand.
I got severe psychosis when I combined Topamax and Amantadine but I have no problems taking either medication alone. You may also have other underlying medical problems that interfere with tolerability such as gastritis or H. Pylori infection in your stomach which causes greater nausea than otherwise expected.
In my experience, once these conditions are treated properly the tolerability for dopamine and dopamine agonists will improve dramatically. This is why it is crucial to keep open lines of communication between you and your physician. His or her knowledge of how meds work on most people can serve as a guide.
Think team effort
Making a connection with the right doctor who understands and listens is key. I trust my doctor when she says it's time to tweak your medications becomes she has known me for 20 years and has my best interest at heart.
In my experience, because PD is a slowly progressive disease, typically once you find the right combo you can coast on that for a number of years. This also buys some time for new medications to come out.
It's true that you have the final voice on what you ultimately put into your own body. However, you should not go at it alone. Make it a habit to always include your physician in the decision of what treatments you opt to take. This includes alternative medicines.
Share as much information as you can
If your physician does not know the full regimen of medications you are taking (which includes prescribed and non-prescribed natural products and various OTC medicines) or all the issues or symptoms you deal and struggle with daily, it is impossible to properly treat you or gauge the effectiveness of any given treatment.
Having more in-depth knowledge of your weekly activities is crucial. Find ways to track both medicines and symptoms by using diaries, charts, wearable tracking devices, or some of the new ‘on-off tools’ available online to guide your discussions with your physicians, as well as your caregiver or care partner.
If remembering is a problem, discuss options like setting timers or the use of pill boxes. Another solution is changing to medicines that are once-a-day (we have several in the works). Eliminating the number of medications taken daily, even if cut in half, or opting for surgical treatments can produce life-altering effects.
Stay in it to win it
Remember that most medicines need to build a steady-state in your bloodstream before you know whether they are working or not. Similarly, many medicines have initial side effects, like nausea, that typically improve after a week or two. So we must not throw in the towel too soon before we have given the medicines a full chance.
It is important to remember that since we don’t have a cure, all we can do is manage the symptoms to have a better life. If you dismiss medicines too quickly, you are minimizing your odds for a better outcome (i.e. quality of life).
Feeling good is not a reason to stop medicines. It means they are doing what they are supposed to do.
The key to maximizing your well-being
In order to get the most out of your medicines, one must have a bit of creativity which, fortunately, those of us with Parkinson’s have been given an abundance of.
After caring for persons with Parkinson’s for more than 3 decades, and living with the disease myself for a third of the time, I discovered 2 things to be key to maximizing general well-being with any chronic illness:
- Sleep, sleep, and more sleep. This means not only allowing yourself time to sleep but also getting medications to help get deep sleep. Even if you only get 5 hours of deep sleep that allows your brain to clean house, that is better than none.
- Consistency in medication intake is paramount. This means starting early treatment as soon as you are given the diagnosis or suspected to have PD (before the disease has a chance to progress). As I have said many times in the past, it is easier to replace oil from a car that has been sullied or lost than to have to replace an entire engine because the bad oil or lack of oil has worn out and burnt the entire engine. Think about it: it is only the rest of your life you are gambling away.
Finding support from others
Once you decide to be master of your destiny, if you have a busy life and don’t have time to remember all the pills you must take, seek help from loved ones or use technology, like apps, to track symptoms and be reminded of when you are due for medications.
Also, discuss with your team of doctors to find not just the most suitable medicines for you but also ones that will have the least number of times you have to take meds. It is not easy but with some creativity and perseverance, it can be done.
On average, how many times per month do you (or your caregiver) go to the pharmacy?
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