Critical conversations: Why talking about our medications is essential

Last month, I had two intravenous immunoglobulin (IVIG) infusions and three other medical appointments. This month, I have “only” one infusion and two appointments because I’ll be away for a few weeks. When I come back — another short month — I’ll have two infusions and five appointments. And so on, ad nauseam, ad infinitum.

Because sarcoidosis can affect just about any organ or system in the body, there isn’t just one “sarcoidosis doctor” to manage everything. I see my rheumatologist, neurologist, and hepatologist every three to four months; my cardiologist and optometrist twice a year; and my pulmonologist, dermatologist, and primary physician annually (more frequently, if there’s an issue). And then, of course, there are the other “-ologists” for my nonsarcoidosis illnesses and any extras that become necessary for special occasions.

Before each appointment, I complete a pre-check-in questionnaire in the online portal. I confirm my insurance, health conditions, and medications, as well as any recent travel and infection exposure. When the nurse brings me to the exam room, we review my medications and current concerns. Then the doctor comes in, and we go through the list all over again, checking the dosage, frequency, and how I feel about each one.

We have such limited time during an appointment, and it can feel like we’re wasting it on redundancy. Why update my chart in advance if they’re not going to read it? Why tell the nurse if the doctor’s just going to ask me again, anyway? But this is a vital piece of information worthy of a double (or even triple) check.

For starters, it’s a long list, so I may forget to include one of my medications at first. By the time the next person reviews it, though, surely I’ll remember. And having it on the screen before they begin helps guide healthcare providers through more detailed questions. Does the medication seem to be helping? Am I experiencing any side effects? Are there any relevant results to check or new tests to order?

Those questions help us determine whether to maintain the status quo or make any adjustments to our current treatment plan. Most recently, we learned that I may have drug-induced liver injury. Years ago, I’d stopped taking methotrexate after it caused elevated liver enzymes, but it’s possible that the IVIG may be a contributing factor, too. Now, we’ll have to see if my levels return to normal after I skip an infusion, and then figure out what to do next.

Doctors may also ask how long we’ve been on certain medications, as that can affect our likelihood of developing side effects. Over time, hydroxychloroquine can cause retinal toxicity and vision loss, so I have to undergo complete eye exams every six months. It’s ironic: I’d originally switched to that drug because it was safer for my liver, but it’s still not a risk-free solution.

Being on steroids for 10 years caused me to gain over 100 pounds, while at the same time weakening my bones — a dangerous combination that led to three fractures and a hip replacement in just over three years. Steroids weren’t my only weight-inducing medications, though. As we continue these reviews, we’re able to make other adjustments, and I’m finally making substantial progress in losing that weight.

These ongoing conversations matter

October is Talk About Prescriptions Month, but we should be having these conversations all year long — and not just with our healthcare providers. It can be helpful to share this information with a caregiver or loved one who may accompany us to medical appointments or run to the pharmacy for us. Likewise, we may want to ask about our loved ones’ medications, in case they ever need our support. To make it easier, I created lists of my husband’s and my medications as shared notes that we can both access on our phones. (As I type this, I’m realizing I should start one for my mom, too.)

It’s also important to include vitamins and supplements in the conversation. They can have side effects and contraindications, too. Doctors may have particular recommendations and want to monitor blood levels based on what we’re taking.

Specifically, people with sarcoidosis have a complicated relationship with vitamin D. Physicians who don’t specialize in this disease often recommend supplementation based on a standard blood test. However, because we overmetabolize it (converting it into a different form of the vitamin), the result is not an accurate reflection of our levels. Consequently, taking additional vitamin D can lead to high blood calcium, which can affect the kidneys, digestive system, bones, brain, and heart.

It can feel tedious, even exhausting, to keep having the same conversation over and over again. But things can change beneath the surface, subtly or drastically, before we even realize it. That’s why it’s essential that we keep talking about prescriptions, even after this month is over.

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.