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Research Your Treatment Options

It Is YOUR Job To Know About Your Medications. Do It.


Updated June 22, 2011

I know that many people think that it's their doctor's job to know what is going on with each patient's medications. I'm here to tell you that you need to know about the stuff you are putting into your body. While this may require some research, and may feel a little overwhelming, you'll likely feel glad you took the time to understand each medication you take -- it's called being an empowered patient. The following information has been adapted from my book, The Multiple Sclerosis Manifesto: Action to Take, Principles to Live By.

Why You Need to Know About Your Medications

People with MS often end up taking a cornucopia of meds: From our neurologist we may get disease-modifying drugs and medications for managing MS symptoms, like spasticity, fatigue, depression or any of the other MS-related things that plague us. We may have a couple things thrown into the mix to handle non-MS problems, like high cholesterol, blood pressure, or thyroid disorders. I know I don’t hesitate to run out and purchase entire drugstore aisles of over-the-counter medications when I have a hint of an allergy or a cold. Then there are the vitamins and supplements that seem innocuous. Many women also take contraceptives to prevent unplanned pregnancies or hormone replacement therapy after menopause. All of these things can interact with each other and with your MS.

Given the huge variety of stuff that may be going into our bodies, it is pretty unlikely that any of your doctors are aware of all of the medications or supplements that you are using. Even if they are, it is very difficult for them to keep up with the potential interactions that may occur. You cannot rely on the pharmacists’ computer alert programs to track it all, either, as many of our MS-specific meds are mail-order only and the pharmacist has no way of knowing what types of supplements and over-the-counter stuff we are taking.

Therefore, it is up to you to do some research on the drugs that you are taking or considering taking. At the very least, I recommend making a little list or chart with the following columns: “Medication/Dosage,” “Interactions,” “Misc./Special Instructions,” “Side Effects” and “Doctor Notes.” What I really prefer is to give each drug its own separate page, giving you lots of room to record your notes.

Make Your Medications List

Again, you may want to make a separate page for each of the meds you are taking, writing the name of the medication in large letters at the top, as well as the dosages and number of times a day that you take this medication. Also, it is good to make a note of when you started taking this particular medication.

Alternatively, in the “Medication” column, list the medications you are taking and the dosages. I would include any over-the-counter things you are taking and supplements that are beyond a daily multivitamin (like St. John's wort or SAM-E).

Interactions Section

The “Interactions” section is simple. List those drugs that you are currently be taking or considering taking. You can also list things that may come up in the future, like certain kinds of antispasticity meds or antidepressants, if these are symptoms that you have that may require medication in the future. There is actually a pretty fun tool to investigate drug interactions, which I cover in my blog Check Out Drug Interactions Checker.

Special Instructions Section

The “Special Instructions” section contains things that you didn’t know about your medication, but you discover during your research (or info that you just want to remind yourself about). These may be instructions that help reduce side effects or increase the effectiveness of the drug, and may include things like “don’t drink grapefruit juice while using this medication” or “take at the same time every day.” It is important to note things like "St. John's Wort can interfere with oral contraceptives" that may impact your choice of birth control (or help you decide to take something else instead of St. John's Wort) now or in the future. Some of this info may overlap with what you found out when researching "interactions" – remember, this is your research and you should organize it in a way that makes sense to you. It doesn't have to be perfect, just useful to you.

Also include any contraindications that apply to you specifically, such as: “not recommended for people with high blood pressure,” or “should not be used by people with diabetes.”

Side Effects Log/Section

“Side Effects” is where you list those things that you may be experiencing, but didn’t know if it was related to any drug. You may want to keep a separate log of when you noticed this particular symptom or problem, when it usually occurs, if anything you do helps, how severe it is and how long it lasts. This sort of specific information is much more helpful to doctors than a vague, "it makes me feel yucky sometimes."

This is also where you make a special note of those potential side effects that are mentioned in conjunction with a warning to “call your doctor immediately if you experience any of these symptoms.”

Doctor Notes and Questions

The “Doctor Notes” section is your space to note those things that you want to mention to your physician and what questions you may have. It is also a place where you can record what his answer was.

My Bottom Line

Just do this. It's an important part of living with this disease, rather than just reacting to it. You'll be proud of yourself when you are done and may even learn something that could prevent problems or alleviate side effects.

NOTE: Now that I've gotten you all fired up to do this, I feel like a little guidance on where to get started might be helpful. Check out my article on Online Sites to Research Medications.

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