If you have multiple sclerosis (MS), you may find yourself taking several medications each day to manage your condition, related health issues, and maybe even the side effects of certain drugs. In some cases, multiple medications may be necessary, while in others, you might be able to talk to your doctor about consolidating your medications into a more manageable number.
Taking a lot of medications is called polypharmacy (“poly” meaning “many” and “pharmacy” meaning “medications”). Polypharmacy is becoming increasingly common in the United States to treat a host of medical problems a person may experience. It’s often seen among older adults, but people living with MS may experience polypharmacy at any age.
It’s not uncommon for people with MS to take a lot of medications. “I am on so many meds,” one MyMSTeam member wrote. Another said, “I feel like all I do all day is take medicine.”
A 2019 study found that among a cohort of more than 300 people with MS, approximately 42 percent experienced polypharmacy with long-term medications. The study’s researchers noted that each person was taking 5.7 medications on average — and some people taking as many as 19.
The takeaway: If you are taking a lot of medications, you are certainly not alone. Learning how to talk to your doctor about polypharmacy is one step to learning if you can cut back, and, if so, how.
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The number at which the amount of medications you are taking becomes “too many” differs from person to person. (Medications include over-the-counter drugs, supplements, and prescription medications.)
Taking several medications without being monitored and routinely assessed can have long-term negative effects. Such downsides might include high drug costs, troublesome medication interactions, and nonadherence due to the complications of having so many medications to track. (Nonadherence means not following prescribed directions, such as skipping a dose when that’s not what your doctor instructed.) Polypharmacy can affect life for a person with MS is by increasing their everyday fatigue and/or cognitive issues.
Some things to keep in mind as you assess whether or your regimen of medications is “too much” include:
If any of these questions make you wonder if you are being overprescribed medication, the next step is to speak to your health care team. Starting the conversation is a proactive way to figure out what to do next.
Be frank and open when talking to your doctors about the medications you’re taking, advised neurologist Dr. Aaron Boster, founder of The Boster Center for Multiple Sclerosis, during a live Q&A event with MyMSTeam on Dec. 16, 2021.
“It can be pretty simple, and it’s good to be forthright about it,” Dr. Boster said. “Say, ‘I want to go through every medicine you prescribed. Explain to me why I need to be on it and explain why it has to be that high of a dose. Tell me which ones we can cut back, tell me which ones we can get rid of.’ And I would try to be draconian and get that list down.”
Dr. Boster also advised taking your list of medications to every doctor treating you, whether that be your neurologist, psychiatrist, general practitioner, cardiologist, or other specialists. “As you move forward in time,” he said, “if the doctor suggests a pill for some ill, say, ‘OK, doctor, if I take that pill, which one will you remove? Because I don’t want to go up.’ So see if you can institute an exchange program.”
Although this approach may seem blunt, it will show your health care team that you have thought about the number of medications you’re taking and that you’re ready to explore ways to scale back — with their knowledge and support. It also tells your health care team — and yourself — that you advocate for your well-being. Further, it sets the stage for you to share your experience with taking several medications — a conversation that will happen against the backdrop of you hoping to scale back.
You may find from these conversations that you can’t scale back on any medications for medical reasons. Still, it’s important for you to know why you have to take each drug on the list. Further, it’s important for your health care team to know that you’d prefer to stop taking anything that’s possible to stop.
Although “polypharmacy” may seem like an overly medical term and perhaps not one you would use, it can be an effective tool to get your doctor’s attention and facilitate the conversation, Dr. Boster advises.
“When a patient who is not medically trained says, ‘I'm very concerned about my degree of polypharmacy,’ I’m going to say, ‘Whoa, how did you know that word?’ And it will lead to an organic conversation,” Dr. Boster noted.
It’s perfectly normal to look at your medications and be unable to remember exactly what each does. One drawback of polypharmacy is having too many things to keep track of for each medication: instructions, side effects, intended benefits, and so on. If you start to lose track, don’t beat yourself up. It’s not unusual, and your doctor should know about the problems you are having.
According to Dr. Boster, if you don’t know what all of your medications do, that’s a red flag for the doctor, not for you. After all, it’s the doctor’s job to educate you regarding what each medicine does and what its side effects are.
So, if you find yourself wondering, “Why am I on this one again?” or if you’re having a difficult time managing side effects (and knowing which side effects come from which medications), relay those things to your doctors. This will indicate to your health care team that a conversation is warranted and that they can do a better job at helping you keep track.
Dr. Boster gave an example script to initiate this type of conversation with your doctor. You could say, “I’ve been on this one medicine for seven years. I don’t even know why I’m on it. You haven’t talked about it in a long time. Can we get rid of that one?’”
Being honest that you don’t know what all your medications do doesn’t mean you’re doing something wrong. It’s normal with polypharmacy, and being honest with your doctor cues them that they can improve their communication with you. It is also a transparent indication that it may be time to reassess your medication list.
No matter where you are in your MS journey and how many medications you take, it’s normal — and legitimate — to wonder if you are being overprescribed medications. But you don’t have to be stuck wondering, and speaking up is the first step out of uncertainty.
On MyMSTeam, the social network for people with MS and their loved ones, more than 180,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.
Are you living with MS? Share your experience in the comments below, or start a conversation by posting on your Activities page.