Parkinson’s has in a way has made me challenge the social norms of what we discuss openly. Though it can be hard on my ego to admit that I struggle with anxiety, apathy, and a host of other problems that are part of the Parkinson’s experience, I think it’s more important to get the word out there about potential pitfalls. I guess I’d prefer to talk about how I managed to pull-off that big project at work despite the hurdles put in place by Pd. But you know, that’s great and all and I’m sure many of you like hearing those things and celebrate those victories with me. But that doesn’t help you much though, does it? Besides, there comes a point where…it’s just not relatable anymore. Because this is real life and in the real world all of our paths are messy and marred by difficulties and failures. Especially when you have a neurodegenerative brain disease. No. I have to include some of the ugly parts. This topic is even more important to discuss precisely because it is a bit uncomfortable to discuss openly. I’m referring of course, to my experiences with Dopamine Agonists.
Dopamine Agonists (DA)s are a class of drug commonly used to treat Parkinson’s. Unlike traditional Carbidopa-Levodopa (C/L), which works by getting Carbidopa into the brain where it is transformed into dopamine, DAs use a chemical that isn’t dopamine, but behaves similarly to natural Dopamine, to counter Parkinson’s symptoms. The type of agonist that I was prescribed several years ago, Neupro is worn as a patch that slowly administers the medication through the skin over the course of the day. Different sizes and/or numbers of patches can be worn to adjust the dosage. The advantages of agonists are numerous. A patch applied once per day provides a steady stream of medication that has a fairly even therapeutic benefit throughout the day. C/L on the other hand tends to last only a few short hours so must be taken at regular intervals. Also, it can take the Person with Parkinson’s (PwP) through a roller coaster ride of symptom control. Initially ramping up to working quite well, then gradually losing effectiveness. Worse, C/L in many PwP is negatively impacted by meals, particularly meals high in protein. A big meal can mean your medication is less effective or even hardly works at all. So naturally, DAs are often prescribed by Movement Disorder Specialists (MDS). They are taken less often, provide steady, continuous symptom control regardless of meals, and they are very effective at reducing stiffness, freezing, tremor, and other Parkinson’s symptoms. But they have a down side. In some people, they tend to increase the risk of Obsessive Compulsive Disorder (OCD) related behaviors and risk taking. Also they tend to increase your sex drive. Anybody see a potential problem here?
The first time I had problems with agonists it was my wife who pointed out that my spending habits were definitely out of the ordinary for me. Normally a level-headed spender, I went on a couple uncharacteristic spending sprees. It happened without me hardly even thinking there might be a problem. It was definitely a bit of a weird experience but fortunately it was brought to my attention before any real damage was done. I contacted my MDS and immediately requested that I reduce my dosage and replace reduced medication with something else. My spending compulsions mostly went away, certainly to a controllable level. I was hoping I was done with “agonist agony”. I wasn’t.
The most recent problem has been an an “unhealthy” sex drive. This might at first not really seem to be a problem but trust me. It is. Especially combined with the increased risk of acting out on risky compulsions. I’m one of the fortunate ones who didn’t end up doing something that goes against everything I stand for as a family man. But believe me when I say that agonists are not something to be taken lightly. Once again, I’ve reached out to my MDS and requested to make changes to my agonists dosage. This time I’m going to go completely off of them. I’m done with agonists.
The more I speak with PwP about their experiences with agonists the more I hear similar stories of people acting out on uncharacteristically risky compulsions. It seems like just about everyone has either personally had a negative experience with agonists or knows someone who did. The guy who bought five expensive bikes before realizing something was amiss. The guy who cheated on his wife. The guy who gambled away his life savings. The guy who was arrested for possession of illegal “media”. The girl who just sort of went nuts. And it seems, without fail, these OCD and/or risky behaviors in the individuals went away when agonists were stopped.
Honestly, I don’t understand why this isn’t discussed more often.
But MDS’s just keep prescribing these medications without really much (if any) warning. These medications really need to be respected.
All that said, there definitely some folks who seem to do fine on agonists. So if you are considering taking DAs for Parkinson’s, consider this a strong word of caution. I’m not necessarily saying not to try agonists, but I am saying be very careful if you do. I would recommend at a minimum letting someone close to you know what the risks of the medication are so they can keep an eye on you. For me, in addition to my wife I regularly discuss such matters with several close friends who also have Pd (one of which had a remarkably similar experience to mine). It may not seem like it can happen to you but it can. And it sneaks up on you. I was definitely one of the lucky ones in that it was caught early, before anything disastrous happened.
Having now started the process of weening off of Neupro, I’m reminded of why it’s so often prescribed. It’s convenient, and it works. But to me, it’s not worth it. When given the choice between functionality and sanity, I’ll take my sanity. Fortunately, there are alternatives to agonists. It remains to be seen if they will be as effective for me but for me, this is the right path!