Should you adjust your own Parkinson’s meds?

The short answer is “No.”
The medications used to treat Parkinson’s disease are primarily meant to deal with the issue of low dopamine in the brain. This seems like a fairly straightforward proposition and over time many people seem to get the hang of what I am doing when I adjust meds. They note that I may have started them on a very low dose and slowly increased the strength and/or the frequency. Major advances or changes in medication dosing should always be directed by a physician trained in movement disorders. There are some exceptions. Sometimes my colleagues will make adjustments if covering on call. It is possible that an emergency room physician might change the dose. If this happens, please let me or your normal PD doc know as soon as possible. Otherwise, these are the only times in which your medications should be changed. However, some patients take it upon themselves to change dose strength or timing. This is generally not a good idea. Advancing doses on your own can lead to unwanted side effects. In the case of carbidopa/levodopa (Sinemet), lightheadedness, nausea, confusion, worsening constipation, impulsivity, and hallucinations are only some of the potential problems.

There is also a less obvious issue of taking too much too soon early in disease, which can result in several issues, including the early appearance of unwanted involuntary movements such as dyskinesia. Patients who take too much medication early in disease may be causing irreversible damage and advance of disease. This is only one example.

In the case of dopamine agonists such as the drugs pramipexole (Mirapex), ropinirole (Requip), and rotigotine (Neupro patch), excess dosing can result in problems such as confusion, hallucinations, impulse control disorder, foot swelling, excessive daytime sleepiness, and sleep attacks. With each of the drugs used to treat Parkinson’s disease excess dosing can be quite serious.

Under dosing is also an issue. Some patients decide they don’t like the way they feel taking the medications, or perhaps they are just “not a pill person.”  They will sometimes decide to take lower doses or with less frequency than prescribed, which can result in the reemergence of symptoms over time. Sometimes this is obvious within a day or two. What many patients do not realize is that there is a longer term effect that may take weeks to show itself. This is a so-called steady-state effect of drugs. Any change in dosing may take up to 28 days to show full effect.

Some patients will abruptly stop drugs. This can actually be dangerous and in some rare cases life-threatening, especially when taking relatively high doses of PD medications.  Don’t do it.

What if my pharmacist doesn’t think I should take it?
Always call your PD doc to discuss before changing any medication, even if the pharmacist has raised concerns. Please understand that pharmacists are very well educated and intent upon helping you. Still, they are not physicians. Pharmacists dispense thousands of different medications written by every type of prescriber, and cannot possibly know the intimate details of each drug. They often raise concern about a so-called class effect, related to the family of a medication and not a specific warning related to a specific drug. For example, Azilect (rasagiline) is in the class of monoamine oxidase inhibitors. There are warnings for the class of drug which were specifically removed by the FDA for the drug Azilect after extensive demonstration of safety with this particular drug. Some of the warnings pharmacists have provided patients have wound up in my office, and appear to be generated by third-party software vendors.  These sheets may not be up-to-date and may occasionally be inaccurate. Conversely, most doctors tend to be very familiar with the 50 or so drugs they commonly prescribe.   I don’t mean to claim we never make mistakes, or that we don’t need the very valuable help of pharmacists, just that it is a complex situation. We all need to work together, so don’t put aside that prescription, call and let your doc know what’s going on.

-Bill Stamey, M.D.

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Bill Stamey, M.D.

A neurologist trained in movement disorders, Dr. Stamey has no relevant financial or nonfinancial relationships to disclose. His artistic rendering is by Emily Stamey. Maine PD News receives no outside funding. www.mainepdnews.org