Dyskinesia is uncontrolled, involuntary movement that may occur with long-term levodopa use and longer time with Parkinson's. Not everyone will develop this complication, and the experience of dyskinesia varies. New and emerging treatments aim to help avoid dyskinesia.
Dyskinesia can involve one body part, such as an arm or leg, or the entire body. It can look like fidgeting, writhing, wriggling, head bobbing or body swaying. Dyskinesia tends to occur most often during times when other Parkinson's symptoms, such as tremor, slowness and stiffness, are well controlled. (This is what doctors and researchers call "on" with dyskinesia.) Feeling stressed or excited also can bring out dyskinesia. Many people say they prefer dyskinesia to stiffness or decreased mobility. Others, though, have painful dyskinesia or movements that interfere with exercise or social or daily activities.
Dyskinesia is a complication of long-term levodopa use in people who have had Parkinson's for several years. Other risk factors include being younger at diagnosis and using higher amounts of levodopa for longer periods of time.
Researchers don't know exactly why dyskinesia develops, but they believe a number of brain chemicals, including serotonin, glutamate and dopamine, play a role. Dopamine is particularly important. In Parkinson's, the brain cells that make dopamine are lost, so dopamine levels decrease. Levodopa temporarily restores dopamine, but because the medication has to be taken several times per day, dopamine levels rise and fall. These fluctuating levels, and the continued loss of dopamine-producing brain cells, make it impossible to keep a steady level of dopamine, which contributes to dyskinesia.
If you experience bothersome dyskinesia, you can discuss several treatment options with your physician:
- Changing the dose and/or timing of levodopa so you get enough in each dose to control your symptoms but not too much that it causes dyskinesia.
- Switching to a different formulation of levodopa, such as extended-release (Rytary) or the gel infusion (Duopa). These drugs aim to keep dopamine levels steady to control symptoms and limit dyskinesia.
- Adding amantadine. Gocovri (amantadine extended release) works on the glutamate brain chemical system to lessen dyskinesia. Prior to Gocovri's 2017 FDA approval, amantadine immediate-release often was (and still may be) used in some cases.
- Undergoing deep brain stimulation (DBS), a surgical procedure. This is not an option for everyone. But DBS may be considered for those who've had Parkinson's for at least four years, benefit from levodopa, and have dyskinesia or significant "off" time — periods when medication isn't working well and symptoms return.
Because of the potential for dyskinesia with long-term levodopa use, many people, especially those who are younger at diagnosis, wonder whether they should start levodopa. This is a personal decision that should be made with your physician, but if Parkinson's symptoms interfere with your job, ability to exercise, or any activity you want or need to do, you may want to consider levodopa. Or, your doctor may first prescribe Parkinson's medications other than levodopa. Your symptoms and medication regimen will be unique. Work with your physician to find what's best for you.
Therapies in Development
Researchers are working to better understand why dyskinesia occurs and to find new and better treatments. Several drugs in clinical testing target different brain chemicals and their pathways. Many, such as under-the-skin levodopa pumps, are designed to keep dopamine levels consistent to control symptoms and prevent dykinesia. Surgical trials also are looking to optimize deep brain stimulation and evaluate a non-invasive (but irreversible) procedure called focused ultrasound to treat dyskinesia. The Michael J. Fox Foundation has supported many of these efforts, and created and validated a tool (the Unified Dyskinesia Rating Scale) to measure the impact of dyskinesia therapies in trials, which was critical in the testing and approval of Gocovri.
Visit our online study matching tool Fox Trial Finder to learn more and sign up for ongoing trials.