as we are in the beginning of Parkinson’s awareness month, I want to talk about the importance of self advocacy. However, this needs to be always done in conjunction with a team of medical professionals including ancillary profesionals like PT, OT, ST, social workers, exercise team, dietitians, and counselors to get the best results.
This is never more important to now as we approach middle and enstages of PD…particularly when we begin to have dyskinesias…the biggest problem I see as a doctor is that patients often self medicate which usually leads to more dyskenesias, side effects, and increase risk for falls and hospitalization from a multitude of problems. Sometimes it may seem contra-intuitive to decrease medications when we feel Poorly…thus we need an expert to guide us. The challenge of maintaining a well balance life with a balanced amount of medications is increasing in complexity thanks to so many new and recent medications released. Although, there really has not been a novel medication introduced since the comt inhibitors – ( nearly 20 years ago) the various formulations of older medication does provide us with greater flexibility in taking medications with fewer number of times we have to dose our selves as well as potentially having better tolerability of said drugs; but as we know the system is far from perfect hence we have so many people clamering for new treatments.
My goal is to give you a run down of the medications available and their potential benefits and side effects as experienced by me (in capacity of MDS / patient).
First, thing we MUST remember is that IT DOES matter when you start your medication…just like in any other progressive illness early diagnosis and treatment is crucial for long term quality of life.
So, Do Not be afraid to start treatment early – key to doing well is having a balanced replacement of chemicals involved in the brain and body which means replacing NOT just dopamine but also other chemicals like serotonin, etc.
although Sinemet, levodopa/ carbidopa, madopar, rytary, stalevo – is the gold standard of treatment, I find that this medication is most effective for treating the cognitive symptoms of Parkinson’s – as I have mentioned before dopamine is the “love” chemical. What happens when we are in love is that everything comes into focus, we are alert, our senses are heightened and we feel great! I believe that some of the best years of my life academically were when I was head over hills in love –
when my illness started, the intake of my first drug-carbidopa/ levodopa allowed me to “feel like myself ” again. Even now, when I take my rytary (the new formulation of levodopa- intermediate release ) I feel more creative, focused, not cognitively fatigued and with sharper memory allowing me to multitask better; yet I find this category as a whole to be the most constipating of all meds. Also with exception of rytary with very prominent Gi side effects-n/v. Fortunately, for most people they subside after a couple of weeks.. For those of us who are extremely sensitive like me..there is lodosyn, domperidone, & zofran, I have used all three but currently only on zofran as needed.
The comt inhibitors – have no active component themselves, they only serve to enhance levodopa effect – stay longer and be more effective in brain.I highly recommend everyone to start this medication early on in disease to have a more consistent and smoother levels of dopa in brain and thus decrease possibility of dyskenesias – 1) by reducing amount of dopa needed a day and 2) making levels more constant. Discolorates – urine, can cause severe diarrhea – and must discontinue when the lattter happens.
amantadine- great for tremors and fatigue – I take once or twice a week to avoid fatigue. Great for dyskenesias in some people once they have. But can cause severe sweating, can worsen or cause depression and cause memory loss- but can still be used in small amounts as I do if taking with an antidepressant.
mao inhibitors – azilect is the most commonly used drug in this category; possibly Neuro protective. And though not proven many MDS still believe (including myself re: azilect) I have been on since the beginng – perhaps this may be a reason I have not advanced as fast as some with my same gene defect? But interestingly, I have noted my sense of smell returning…I will have my doctor repeat the snell smell test. I know of only one other person in my close circle who has had the disease as long as I have and been on azilect since the beginning and has also noticed improved smell. However, the biggest benefit in my experience is improved balance and gait. It also treats central PD pain better than narcotics, at least this has been my experience as well as that of several of my colleagues. This was and is one of the most diabiling problems with PD and azilect has been my redeeming drug. I can’t live without azilect due to return of central pain. This drug is also good for vision deficits although not as good as neupro patch in my own personal experience.
Artane- great for tremors but similar to amantadine in causing memory loss and like amantadine can cause hallucinations in those with dementia or are predisposed to getting dementia.
dopamine agonists- mirapex (er), sifrol, requip (xl), neupro- this latter one is great because it does same as comtan – helps to smooth levels of dopamine, Neupro helps with stiffness and slowness – down side is that this category cause a lot of sleepiness not the neupro ( which at onset causes hypervigilance like you took steroids) and they can increase “natural” tendencies towards unwanted behaviors like gambling and shopping.. Of course this one also can cause hallucination and worsen dementia …not seen this problem with neupro.
In order to maximize benefit of medications, in my experience is to use a combination of several of the above in small amounts – this decreases side effects of each individualy and diminishes risk of dyskenesias. Also important to remember that unless had hallucinations (even then may be away to take med and get around it- with meds like seroquel, Exelon, or nuplazid) or severe diarrhea all meds can & should be retried ..because our bodies change over time. Plus, the dopamine agonists and amantadine can stop working after 5-10 years ..but after a time off ( at least-6 months to a year) they can be reintroduced.
As a last comment although, I am not going to cover topic – Parkinson’s dementia CAN be treated successfully for a long time if diagnosed early and treated early. Make sure you have a baseline mental status test and get a repeat once a year and more often if symptomatic.
Proactive treatment and prevention is the key to successful treatment of PD which means frequent visits to the neurologists/ MDS and more often as disease advances.
spread the word and help #endparkinsons.