“The key to change is to let go of fear.” Rosanne Cash
“Worry does not empty tomorrow of its sorrow. It empties today of its strength.” Corrie Ten Boom
Introduction: Seven years ago, when diagnosed with Parkinson’s, I began taking Ropinirole, a dopamine agonist. And in the last month, I decided to stop taking Ropinirole and tapered down to zero. The reasons why, the strategy of how, and the story follow.
“Don’t let one cloud obliterate the whole sky.” Anais Nin
Dopamine Agonists, the Good Part: What is Ropinirole? What are dopamine agonists? Dopamine agonists are drugs that mimic the action of dopamine. They bind tightly to dopamine receptors in the brain and thus, they turn on the neurotransmitter pathways promoted by dopamine. There are five dopamine receptors in the brain, dopamine binds primarily to D1 and D2. Likewise, dopamine agonists bind primarily to D2 and D3 of dopamine receptors in the brain, copying the effects of dopamine in order to improve disorders that have resulted from low levels of dopamine.
To review the action of dopamine, please look over this blog post: “Purple Haze of Parkinson’s: How Dopamine Works.”
Ropinirole is a non-ergoline dopamine agonist. It is thought that Ropinirole stimulates D2 and D3 receptors within the caudate-putamen region in the mid-brain. The good news is that Ropinirole binds to D2 for motor functions, while the bad news is that Ropinirole likes D3, which is also involved in reward (including addictive drugs) (see the drawing below). In general, Ropinirole provides relief from the motor symptoms of Parkinson’s, such as stiffness, tremors, muscle spasms, and poor muscle control. Ropinirole can be used either as monotherapy or in concert with Carbidopa/Levodopa.
For me, Ropinirole worked really well, it gave me relief from stiffness, tremors were more manageable, and I began it seven years ago. With time, I had worked up to taking 18 mg/day (3 x 2 mg tablets, 3 times per day). After several years, we added Carbidopa/Levodopa and everything still seemed in sync. WIth the short half-time of Levodopa (t1/2 of ~90 min), the longer half-time of Ropinirole (t1/2 of ~6 hr), it served as a bridge between doses of Carbidopa/Levodopa.
To review the mechanism of dopamine agonists, please see this blog post: “Parkinson’s Treatment With Dopamine Agonist, Complementary and Alternative Medicine (CAM), and Exercise.”
“Never say never, because limits, like fears, are often just an illusion.” Michael Jordan
Dopamine Agonists, the Bad Part: During the summer months in the South, ticks fall out of trees as you walk by; they are little heat-seeking creatures. They quickly latch on and begin their task of eating and digesting our blood. Once settled, they are tough to remove, sometimes requiring a knife blade or even the flame from a lighter. I compare dopamine agonists, especially Ropinirole, to ticks. These tick-like drugs search out and bind to parts of the brain that contain D3 receptors; they become dominant, and you will have a difficult time removing their hold on you. And when you get rid of a tick, there are always others ready to bind and begin their hold on you.
Impulse Control Disorders (ICDs) are behavioral disorders that occur from an inability to resist an impulse, you can not control specific behaviors. Sadly, ICDs occur in Parkinson’s, and the use of dopamine agonists (DAs) increases the frequency of ICDs. Thus, it is speculated that dopamine agonist activation of D3 receptors in the limbic system contributes to the development of these ICDs.
The most common ICDs in Parkinson’s include pathological gambling, compulsive shopping, compulsive eating, and hypersexuality; they also include punding (An intense fascination with complex, excessive, repetitive, non–goal-oriented behaviors. The behaviors include less complex acts, such as shuffling papers, reordering bricks, or sorting handbags, shoes, clothes, etc.) or more intense acts like hobbyism (painting, gardening, writing) or compulsive internet browsing, and hyper-creativity.
I had been feeling somewhat different for several years, I know I know, it could just be Parkinson’s. However, it seemed deeper than that, I was shopping too much online, my personality was just a little too persistent, and I felt wired or on all the time. The more I read (and wrote) about dopamine agonists, especially Ropinirole, the more I began to think, okay, let’s get off of it. It especially became a concern as I read that men over 70 years of age (I will be 68 years old this summer) had a more difficult time with ICDs while on dopamine agonists. This began some email conversations with my Neurologist, who is a great guy, and generally goes along with all of my schemes/treatment ideas, etc. But this one he took seriously, and so below is the strategy we devised for a Ropinirole taper.
To read further about dopamine agonists and ICD’s, please look over this blog post: “Dopamine Agonists and Impulse Control Disorders in Parkinson’s.”
“Stop waiting for others to tell you what you can do. Start putting faith into your own strengths and talents. Instead of questioning whether you can reach your goals, move forward with conviction and confidence.” Jane Powell
The Ropinirole Taper: If you are taking a dopamine agonist, there is growing concern about something termed DAWS or Dopamine Agonist Withdrawal Syndrome. The medical concern is that up to 20% of the Parkinson’s population have a very difficult time removing dopamine agonists from their daily doses, and they suffer severe withdrawal symptoms while reducing the drug even just a small amount. Remember my analogy above comparing dopamine agonists to a tick stuck on you, they just do not want to come off. I envision it as a symbiotic relationship between impulsive/compulsive habits being magnified by the dopamine agonist. The dopamine agonist enhances the behavior and the behavior latches onto the dopamine agonist. This is NOT your doing, this is NOT something you control because it clearly is the bad side of a drug interacting with your brain.
I wrote about DAWS a while ago, check it out: “Dopamine Agonist Withdrawal Syndrome (DAWS) in Parkinson’s.”
We followed a month-long taper, reducing Ropinirole weekly from a starting point of 18 mg/day, with a reduction to 12 mg/day in week 1, to 6 mg/day in week 2, to 2 mg/day in week 3, and then finally in week 4 to 0 mg/day. The Table below gives the entire ‘picture’ of what was going down (Ropinirole) and what was going up (Carbidopa/Levodopa).
I still have Parkinson’s, and I still have a deficiency in dopamine; thus, there had to be a counter-balance between Ropinirole and Carbidopa/Levodopa. You base such action using what is called a “Levodopa Equivalent Dose Calculator Program.” I really liked the program I used, you can gain access to it through the following URL (click here). Of course, all of these algorithms make assumptions about equivalency, but if it is off, it was consistently off; thus, it did not really matter. I used the Levodopa Equivalent Daily Dose (LEDD) as a marker to allow me to make approximate changes in Carbidopa/Levodopa as I went further on the Ropinirole taper. Basically, I used the way I felt each morning and adjusted the amount of Carbidopa/Levodopa I was taking each day. It is neither an exact science nor rocket science to making the decision, but for a month I kept very near my starting LEDD of 1080 (See the Table above).
“Conquering others takes force, conquering yourself is true strength.” Laozi
How did it go? How do I feel? What’s up? Beginning the taper felt like climbing the steps to a high-diving board at a pool and just simply jumping off into the water below. It was a free fall. After being on Ropinirole for seven years, it was a shock to my body. I became acutely aware of the off-on period of Carbidopa/Levodopa, it is just not a slow transition, it was more of a precipitous plunge. Clearly, there was a beneficial medical effect for Ropinirole, and I was trying to cope and modify things day by day. Week 1 was okay but I just felt different. Weeks 2 and 3 followed and I felt better, the melting on the effect of Carbidopa/Levodopa with the seemingly sudden drop-off point was just something to accept. I will say I prolonged each individual week by a few extra days before continuing the Ropinirole taper. Reaching the 4th treatment period of zero Ropinirole was surely a good feeling albeit somewhat of a victory. Having now begun the third week in the absence of Ropinirole has me feeling calmer in mind and action.
“Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength.” Arnold Schwarzenegger
Closing Thoughts: I felt it crucial to my current/future health and mental state to do this Ropinirole taper. The way I feel today is definitely better than the way I felt 2 months ago. Not being one of those people who cannot get off Ropinirole was a huge relief. Now I am dealing with the awareness of the Carbidopa/Levodopa off-on cycle when to eat food and balance taking Carbidopa/Levodopa. Am I worried about taking too much Carbidopa/Levodopa? No, not really, saving that for another blog post.
I am happy to report that I have successfully removed Ropinirole from my daily treatment of Parkinson’s. As Nina Simone sings in Feeling Good, “It’s a new dawn / It’s a new day / It’s a new life / For me / And I’m feeling good / I’m feeling good.”
“If we understood the power of our thoughts, we would guard them more closely. If we understood the awesome power of our words, we would prefer silence to almost anything negative. In our thoughts and words we create our own weaknesses and our own strengths. Our limitations and joys begin in our hearts. We can always replace negative with positive.” Betty Eadie
Cover Image by Free-Photos from Pixabay
11 Replies to “Treating Parkinson’s with a Dopamine Agonist: The Ropinirole Taper”
Glad you chose to change your medications with a positive outcome. I am sure it was a big step, but you would never have known if you had not had the courage to make a change. Congratulations.
Thanks for the vote of confidence, it is much appreciated.
I am very glad that your experiment seems to be working and especially making you feel better. Keep on keeping on.
On Sat, 1 May 2021 at 10:18, Journey with Parkinson’s wrote:
> Frank C. Church posted: ” “The key to change is to let go of fear.” > Rosanne Cash “Worry does not empty tomorrow of its sorrow. It empties today > of its strength.” Corrie Ten Boom Introduction: Seven years ago, when > diagnosed with Parkinson’s, I began taking Ropinirole, a do” >
Thanks Ed. As a long-time scientist. this really was an experiment (but on me). And the results are still on-going but I’m optimistic and always hopeful. Great hearing from you, Frank
This is a great post Frank! I hope the PD community appreciates the amount of personal and informative insight you bring to each of these blogs!
Thank you my friend and I hope this message finds you well, happy, and content. Miss you and PWR!On,
Sent from my iPhone
Jenn, thanks for your note and comments! Part of the goal of my blog is to ‘share’ my journey personally. Part of the goal of the blog is to inform/educate without trying to preach. This was an important story and issue to share, so I’m really glad it resonated with you. Hope all is well with you and keep everyone moving at the PWR!Gym, Frank
P.S. Hopefully, sometime soon, you will start traveling and teaching PWR!Moves workshops in person? Let me know if you get near to NC, and need PwP volunteers.