As a neurologist and movement disorder specialist, I have seen the devastation Parkinson’s disease can cause when only a handful of medicines are around …since that time I have had a privilege to witness the Decade of the brain which brought us many new treatments including surgical advances that promised to improve a person’s quality of life.
Yet, despite the many new medications and improved living, the medications are not always tolerated and may have unwanted side effects which may have some people questioning whether it’s worth taking medications. I know I have many a times both as a doctor and as a patient!
The good news is that since I graduated from medical school there have been a number of medicines introduced to help modulate disease- the whole class of MAO- B inhibitors, COMT inhibitors, and most of the Dopamine agonists are new!
Anticholinergics which include things like Artane is the oldest category that are not as widely used as before due to advent of more effective newer treatments.
Carbidopa/levodopa is still the Gold standard of treatment developed since the 1960’s.
There are many formulations containing this active compound which includes things like Carbidopa/levodopa/entacapone ( Stalevo), orally disintegrating Carbidopa/levodopa ( Parcopa). In the near future we may have nasal Carbidopa /levodopa or intrajejunal Pump infusion of Carbidopa /levodopa.
But, like any drug it has many potential side effects, most are tolerable to most people. However, there are some individuals who are unable to tolerate any currently available medications, although this percentage is decreasing with the increase number of classes and types of medications available. Yet, because of the unique nature of Parkinson’s which is so individualized we have not been able to find one medicines that fits all and helps all.
Hence, everyone’s treatment plan and medication schedules are as personal and individualized as is their disease.
Here, I will attempt to guide Parkinson’s patients to the world of Parkinson’s medications their benefits and side effects based on my experience as a Parkinson’s doctor and Parkinson’s patient.
As a doctor and Parkinson’s patient, I have used all Parkinson’s meds in my practice at one time or another and have tried a good many number as a patient. I can tell you I, like most physicians, have my favorites. However, without exception even the most tolerable medication will encounter an individual not unlike myself that is extremely sensitive to any foreign substance and will experience unwanted side effects. The key is learning when are these side effects tolerable and worth living with and when they are dangerous. There is always a risk and benefit ratio that needs to be considered. The best way is to ALWAYS have an open communication line between you and your physician and keep a diary of all medications taken which includes dosage, time, and quantity as well as if taken on empty stomach or not.
Never change more than one medicine at a time so that you can evaluate its efficacy! Keep your doctor informed of all new meds added by other physicians for other medical problems and even of all your over the counter medications because these too can have an impact on the efficacy of your Parkinson’s meds.
Furthermore, as I mentioned in a previous blog there is a big difference between generic and brand and all generics are NOT the same! (because a big portion come from overseas which are not subject to FDA scrutiny). Try to stick to same formulation at all times brand or generic and if generic stay with same generic maker for optimal results!
The most frustrating thing is feeling like a Guinean pig while medications get adjusted especially someone outside the medical field this can seem preposterous! Why can a physician just give you one medicine and work, you wonder? It is because we are not all created equal and even though your doctor gives you the best medicine he or she thinks will do its job optimally with least results …sometimes there is a big difference between theory and reality!
So, be patient, keep open mind and open communication….remember medicine is most often an art more than an exact science so be patient and an open line of communication with your physician at all times! ..Hence it is important that you follow with a neurologist/ movement disorder specialist with a lot of experience that is familiar with the nuances of disease, medicines and can recognize any small changes….
Most of us always prescribe medicines with medicines that we think are the best ….yet, this does not always translate to best treatment plan for every individual. As, I have experience many a time both as a physician and as a patient. I too have turned out to be extremely sensitive to medications and even though they all have “worked” in regards to the symptoms I was experiencing the side effects of many were simply intolerable making me feel like side effects were worst then disease! (Many of you know something about this!)
The Purpose of medicines is to make you feel better and improve quality of life not vice versa. Having said this, unless you had an allergic reaction to medication…never be afraid to retry medicines which you have not tolerated in past because most times 1) people develop tolerance, 2) effects maybe do to other compounding ( co morbid systemic problems that are not controlled, or un diagnosed).
Furthermore, not only is following with a specialist a way to insure increase quality of life but also a way to increase longevity. BUT, the most important aspect to a better life is taking medication and starting early something that I know has many of you troubled. Avoiding medicines will only worsen your disease faster from personal experience and lead to more complications like falls, swallowing problems, cognitive problems and urinary problems and increase your chances of becoming bed bound. Yes, medicines are not a cure but they do help to keep these problems at bay. Remember, prior to development of all the dopa agonist, different levodopa formulations, Mao inhibitors and comt inhibitors…patients although lived ” normal” life span had no or very poor quality of life. Fortunately, we have options plus we know that maintaining both physical and mental activity helps people thwart off physical deficits longer.
Maybe even open up that unknown or underlying artistic phenomena you never knew you had or was barely aware of.- go ahead express yourself and don’t be afraid to use all the colors of the rainbow in whatever artistic way you find of expressing yourself whether through art, music, writing or humor.
I have experience both in my practice and in myself that the majority of times people have Gi problems like nausea and vomiting with medications is because they have untreated or poorly controlled reflux, gastric disease, constipation and even H.pilory. So, I recommend that if you are experiencing such difficulties you discuss with your physician about obtaining a Gi consultation…after all, the best management of Parkinson’s disease is a team approach involving many specialist and ancillary services like PT, OT, and ST Etc.
For example, at the beginning I could not tolerate Sinemet ( carbidopa/levodopa without getting violently ill….turns out I had severe esophagitis caused by radiation changes which needed treatment and healing…once this issue resolved…I no longer had problems with Sinemet. Team approach…don’t forget about other problems besides Parkinson’s ….few people have no problems beside Parkinson’s especially if you are an older person within the average age of onset for idiopathic PD.
but, if you truly have severe Gi problems, fortunately there are a few formulations that can bypass your gut and get you same effect without getting sick to your stomach…like Parcopa (oral disintegrating pills, or topical meds like NEUPRO patch… And soon hopefully nasal spray and intrajejunal dosing of dopamine will be another choice).
Not only do you have to try many meds, many doctors to find right combo…when you do these may lead to not only unpleasant side effects but sometimes dangerous side effects like severe OCD – leading to gambling, or sexual hyperactivity in turn leading to inappropriate behaviors in compromising situations. The dopa agonists have been known to be more prone to causing these problems …some more than others. Please discuss with your physician if you notice any such tendencies at the onset of meds DO NOT wait until they become a problem and most definitely discuss with them if you have had such tendencies prior to starting medicines to prevent from worsening.
These same medicines can cause severe sleepiness which can be very dangerous but all of them can so this….if this is the case again discuss immediately with your doctor…there may be medicines to help like provigil or nuvigil etc. do not drive if sleepy! (the doctor may recommend a sleep study to make sure no other contributing causes).
All medicines have potential to cause cognitive problems, hallucinations- especially dopamine agonists and amantadine (Symmetrel) and Artane in older patients. One important thing to keep in mind is that if you have “early disease” and you experience these problems (particularly hallucinations) you are most likely to have an atypical Parkinson’s syndrome like Lewy body dementia etc. Again, discuss with doctor ASAP! So, you can get right diagnosis and prognosis to get your affairs in order in a timely basis.
Furthermore, a lot of the medications especially dopa agonists, & dopa meds can cause low blood pressure and sometimes high blood pressure therefore if you have diagnosis of hypertension (high blood pressure) you must discuss with your physician the possibility of adjusting blood pressure meds and also I highly recommend that you stagger the intake of your medicines so you don’t end up with a synergetic effect (summation of side effects). For instance, don’t take your blood pressure medicine at same time as your Parkinson’s medicine because both together can drop your blood pressure so low may lead to severe dizziness or worst passing out! Take at least an hour apart…..
Other meds like amantadine can cause depression…always discuss with your doctor any history of depression in you or your family and if experience any symptoms of unprovoked sadness lasting more than a week discuss with them ASAP or go to emergency room ( ER) if feel like you might hurt yourself.
Also, there are recent studies that suggest that some dopa agonists might cause cardiac abnormalities…to be on safe side discuss in detail with your physician -he/she may recommend a cardiac evaluation prior to staring these meds and also have routine monitoring.
NEUPRO can cause leg cramps and restless leg (usually when med is wearing off or don’t change the medicine in a timely basis) and contact dermatitis (skin rash). The first easily treated…the latter will cause for medicine to be discontinued.
Comtan and Tasmar (COMT inhibitors) can cause diarrhea which is unrelated to dose and will not go away…thus if this occurs med will have to be stopped. Tamar also requires frequent blood monitoring because of the rare chance of causing liver damage!
Some other medicines in the MAO inhibitor category may have one dietary restrictions (I.e. azilect – if consume too many age cheeses, sausages and wine can cause a severe reaction which can cause increase temperature and blood pressure which can lead to death). Same drug has to be stopped prior to general surgery for same reason!
I hope by now you realize that there are a lot of potential unpleasant and bad side effects with these medications but also realize that without replacement of dopamine, you may be dooming yourself to a very painful, difficult existence depriving yourself and your loved ones of the possibility of continuing to be a productive, and an independent member of society. The key is early diagnosis and treatment to be able to enjoy true lasting quality of life. I know everyone is afraid of having dyskinesias and starting dopa meds “too early” because of this potential, or “running out of options” before the disease has run its full course. Let me assure you that 1) fortunately, new medicines as well as surgical treatment options are coming to the market every year so the likelihood of running out of options is very slim. 2) although, it is true in general we like to reserve “dopa” for later stages this is not always possible depending on the individuals presenting symptoms and overall health and co existing diseases but due to various drugs available the dopa doses do not have to be as high as once were because no other alternatives plus with the development of both long acting and soon to be intermediate acting formulations along with the co intake of things like Comtan or Tasmar or Stalevo… dyskinesia occurrences are decreased! It is always best to be on medicine to and be able to not only care for yourself and loved ones but also bring them joy through the gift of your artistic expression that seems to be at least partially enhanced by intake of dopamine!
So, don’t shy away from medications….. in an experts hands they can be manipulated to your advantage and reintroduced multiple times to achieve maximum effect because although a lot of them have a certain life span of efficacy if given a break and reintroduced they can have equal or more effective benefit than the first time given.
Remember, the key to success is positive attitude, open communication with your doctor, and willingness to try new things knowing that every individual is different and thus their response to medicines is different and will vary from person to person.
Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com
may also contact me at