Smart Patients Blog Series 2 of 5: Dr. Gilbert Discusses Parkinson’s Disease Medications
This article is part 2 in our Smart Patients Blog Series
Parkinson’s disease (PD) medications continue to expand, which is giving patients more options than ever before. However, choosing between different formulations, delivery systems, and add-on therapies can be confusing.
This post is the second in a five-part series recapping APDA’s recent “Ask the Expert” event on Smart Patients, where APDA’s Dr. Rebecca Gilbert answered questions from the Parkinson’s community about diagnosis, symptoms, and treatment. Below are her answers to participants’ questions about medications, timing, costs, side effects, and newer treatment options. (Scroll to the bottom to learn more about APDA’s partnership with Smart Patients, a supportive online community.)
Question and Answers About Parkinson’s Disease Medications
Q: My mom is 82 and has been cognitively clear until the past year when she has become progressively confused. She has recurrent urinary tract infections, and it is hard to know whether the confusion is due to the infections or to cognitive decline related to Parkinson’s.
A: As you suggest, it is not possible to know whether your mother’s cognitive issues are due to her frequent urinary tract infections (UTI) or not. That is why, especially if cognitive changes happen quickly, testing for infection is crucial. If a UTI is found, treating it is very important. In your mother’s case frequent UTIs could definitely be impacting her cognition. If she has not yet seen a urologist, she should. He/she may have some suggestions about how to decrease the frequency of the infections which could help her overall.
Q: My husband was prescribed Crexont (a new formulation of carbidopa/levodopa) and a 90-day prescription is $800 for three months. Is there anything on the horizon that may be as helpful but not cost-prohibitive?
A: Fortunately, this is not everyone’s experience, and there are insurance companies that pay more fully for Crexont. So, if your neurologist suggests this medication for you, don’t assume you won’t be able to afford it. Your neurologist will likely have to get prior approval from your insurance company; but after that, the medication may very well be affordable. If this is not the case, ask your neurologist about Patient Assist Programs that can help you pay for the medication. If all these options are explored and the co-pay is still too high, then other long-acting carbidopa/levodopa formulations can be considered.
Q: What are the reports and experiences when comparing Vyalev pump vs. Duopa vs. Sinemet pills, including the pros/cons of each and any protein interaction issues?
A: All of these treatments are formulations of carbidopa/levodopa, but their delivery methods are different.
Vyalev is a 24-hour infusion of carbidopa/levodopa into the subcutaneous tissue. Duopa is usually a 16-hour infusion through a tube into the small intestine. Sinemet is one type of oral medication for PD.
Duopa requires the surgical insertion of a tube into the small intestine for delivery of the medication. Vyalev does not require that. Instead, the person with PD is taught how to insert a small cannula, or tube, directly into the fat of their belly or thigh. The absorption of the medication in Vyalev is not through the gut so there is no issue with protein interaction which can be a problem with Duopa or the oral pills.
Each of these treatments are favored by some and not favored by others for a variety of reasons, so it is hard to make any statement that is applicable for everyone. It is important to talk through these and other options with your doctor to decide the best treatment for your specific circumstances.
Q: When should patients start taking medication if tremors aren’t causing major problems yet? What’s the reasoning?
A: The medications currently available for PD unfortunately do not delay progression of the disease or change the course of the disease, as far as we are aware. Therefore, if a person is functioning well or has a symptom such as tremor that is not too bothersome, then delaying starting medication is a reasonable choice. However, it is important to be aware that a person with PD may have deficits that they are not fully aware of that could be improved with the medication. For example, there may be stiffness that is uncomfortable that could be helped. Exercise is very important for people with PD, so if your symptoms are interfering with your ability to exercise or keeping you from exercising optimally, that could be an importantreason to start medication.
Q: What does adding entacapone or opicapone do for a patient? Does adding these medications to Sinemet increase the likelihood of dizziness or lightheadedness?
A: Entacapone and opicapone are medications that enhance the strength of a carbidopa/levodopa dose by decreasing its breakdown. It tends to increase the strength of a dose by about 30%. It will amplify everything that carbidopa/levodopa does – including improvement of motor symptoms of PD (decreasing slowness, stiffness, tremor, walking and balance problems) as well as the side effects, so it can increase lightheadedness.
Q: What can you tell us about add-ons, like amantadine or Gocovri, and different combinations/ versions of carbidopa/levodopa? When and why are they recommended?
A: There are a lot of medication options for the motor symptoms of PD, which is great. People with PD are different, and sometimes one type of medication causes side effects for one person while another does not, or one type of medication does not help as much as another. Response to medication can vary a lot from person to person. So, if you are on a medication for PD and you feel like it is not working well or you are having bothersome side effects, talk with your doctor about your other options. It is worth making an adjustment to your current medications or trying something else. It is very common for people with PD to change and adjust their medications throughout the course of their disease.
Now let’s talk more specifically about some of the different options. There is immediate release carbidopa/levodopa (C/L) also known as Sinemet. Over time, a dose of immediate release C/L may last for shorter and shorter periods of time and PD symptoms return between doses. When the medications are working, the person is considered “ON” and when they are not working, the person is “OFF”. This phenomenon of fluctuating between ON time and OFF time is also known as motor fluctuation. If this happens, switching to a longer-acting C/L such as Rytary or Crexont may be helpful. Entacapone and opicapone are medications that can be added onto C/L. They inhibit the breakdown of C/L and therefore allow a dose of C/L to last longer, which is another way to treat motor fluctuations. Amantadine is available in short-acting and long-acting forms. The long-acting form is called Gocovri. These medications can help with OFF time and can also be helpful for dyskinesias, which is a side effect of C/L in which there are extra, dance-like movements. Bottom line is that each of these medications have their place in the treatment options for PD.
Q: Are all these drugs mentioned in the question above mainly or solely aimed at movement problems, or do some of them help with non-motor problems?
A: All the medications mentioned in the previous question (amantadine, Gocovri, entacapone, opicapone, and carbidopa/levodopa) are for the motor symptoms of PD. Many of the non-motor symptoms of PD have treatment options too, so make sure to mention them to your doctors.
Q: Are there any drugs that can help with impulsivity? (And is impulsivity a symptom or a side effect?)
A: Impulsivity can be a side effect of dopamine medications. If you are experiencing impulsivity (such as gambling, hyper-sexuality, or over-eating), let your health care providers know. They may want to adjust your medications.
Q: Does constipation cause PD medications to be less effective?
A: When a person is severely constipated, the gut can get backed up, and the time it takes for a medication to be absorbed can therefore increase. This is true for many medications including Parkinson’s medications. Since constipation is such a common non-motor symptom of PD, the fact that it causes slowed absorption of PD medications is common too. If constipation is a problem for you, be sure to talk to your doctor about it as there are treatments that can help.
There is no single medication strategy that works for everyone living with PD
Treatment plans often evolve over time as symptoms change and new therapies become available. It is very important to communicate with your healthcare team so they can ensure your treatment is as effective as possible every step of the way.
About APDA’s Partnership with Smart Patients
APDA collaborates with Smart Patients, an online discussion forum where people with PD and their care partners can connect, share advice, and get support from others who understand what they’re going through. Recently we hosted a special “Ask the Expert” session on the Smart Patients platform, an outgrowth of our virtual broadcast Dr. Gilbert Hosts: Ask the Doctor Anything. For three days after that webinar, Dr. Gilbert answered a wide range of reader questions about Parkinson’s diagnosis, symptoms, and treatment, including several she didn’t have time to address live. You can read the previous blog in this series that focuses on questions about early signs and symptoms of Parkinson’s disease
We encourage you to join the Smart Patients community – it’s free and easy to participate, and you might find it to be a helpful addition to your PD toolkit.
Tips & Takeaways
- There are different carbidopa/levodopa formulations available, and each has advantages and disadvantages
- Vyalev and Duopa provide continuous levodopa delivery through different methods
- Entacapone and opicapone help levodopa last longer
- Amantadine and Gocovri may help manage dyskinesias
- Medication decisions should be individualized based on symptoms and side effects
- Keep an eye out for additional Q&A blogs like this one as we summarize important questions asked during the Smart Patient “Ask the Expert” event
Clark Jones, PhD, compiled and organized this blog based on the Smart Patients “Ask the Expert” session featuring Dr. Rebecca Gilbert.