My Approach to Taking Medications

In my experience and that of my family, with rare disease comes several additional health conditions. As a result, there is usually a lot of medications to manage. I really don't mind taking medications. I grew up requiring daily medications. It's just part of my life.

Medication regimens can be challenging

I feel fortunate that when I'm prescribed a new medication it isn't bothersome to me. I often hear from others, regardless of whether they're long-term rare disease patients or brand new to having a health condition, how upsetting it can be to be required to start taking medication or add a new medication.

My mother, who had a rare disease plus other conditions, had difficulty with managing so many medications. Admittedly, she needed many more medications than I do. Many of her medications required specific timing from one another and taken around mealtime.

My approach to my medication regimen

In contrast, my medications allow me more flexibility. I can take them any time in the mornings and evenings. For this reason, it's also considerably more manageable for me to take my medications and remember to do so compared to a more complex regimen.

My doctors know that I'm always trying to take the lowest necessary dose of medication with the lowest frequency and with the goal not only possibly reducing the medication but even ultimately being able to stop the medication.

Ensuring I take the lowest necessary dose helps me to:

• Reduce the number of pills I take
• Reduce out-of-pocket costs
• Reduce the chances that my body builds up resistance to drugs

Collaborating with my doctors

Plus, I don't want to take medications if I don't truly need them. I tend to oppose my doctors often to try to reduce tests, procedures, and medications if I don't find them completely necessary. I do the same when a doctor gives me a new diagnosis I don't completely agree with.

Understanding the rationale

For this reason, it's not uncommon for my doctors to need to explain their rationale for increasing a medication dose or frequency for me to feel comfortable with the change, even though I'd still comply with the change regardless of whether I agreed with the change.

For instance, my primary care doctor wanted to increase my antidepressant medication when I requested anxiety medication. At first, I wasn't keen on increasing the dosage until she explained how an increased dose could manage both symptoms for me without the need for additional medication. I was sold on that – the benefits outweighed the cons and decreased my out-of-pocket cost.

Choosing higher frequency dosages

Due to my medication reduction preferences, my doctors will often prescribe medications at higher frequency options so that I can adjust the frequency as needed according to my symptom severity.

For example, I have the freedom to take my esophageal dysmotility medication 3-4 times a day and my abdominal migraine/fibromyalgia medication 2-3 times a day based on flares. This also allows me to have more than adequate medication to help reduce coverage gaps between refills or order renewals.

Enjoying some control over medication management

I highly appreciate the freedom to control the medication management that my doctors provide me with and trust me with. I'm fortunate I don't have to be concerned that my doctors may mistakenly think that I'm medication seeking or abusing my medications. This is, unfortunately, an understandable concern that I frequently hear from others in the rare disease communities, as well as a fear I have myself – particularly anytime with new health providers or when requiring an emergency room trip.

No matter our conditions, how many medications we require or even our acceptance level of taking drugs, I think it's a universal desire to reduce medications when and where we can.

How comfortable are you with taking medications?