Taking medication is complicated with a lactose allergy

I have a mortal enemy. We circle each other often. I’m consistently trying to de-escalate and avoid, while they’re popping up at the most surprising moments, rendering me incapacitated. I spend hundreds of dollars a month trying to protect myself, hoping I continue to be successful in my lifelong fight.

Who is this enemy? Milk and its derivatives — most often lactose. How is it my enemy? Because while milk is one of the top eight allergens in the United States — and one of my own major allergens — it’s an extremely popular medication filler, also called an inactive ingredient.

Try as I might, I can’t seem to shake the fact that lactose is everywhere, and trying to avoid it is a hefty financial and energy burden. The ingredient can be found in every birth control pill, several allergy medications, many anti-anxiety medications, antibiotics, anti-nausea drugs, and even Paxlovid (nirmatrelvir/ritonavir), which is given to high-risk patients who have COVID-19.

On the surface, lactose makes a great filler because of its stability, low cost, sweet taste, and compressibility. Most people with mild to moderate lactose intolerance can usually tolerate the filler because it’s such a minute amount.

But for people like me, with an allergy or severe intolerance to lactose, or for people who observe a dairy-free diet, it causes significant strain.

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Lactose in medication

So what happens when I’m prescribed a medication that contains lactose, whey, or another milk derivative? The first step is to try to find out if there are any manufacturers that make the medication without dairy. Occasionally, one specific brand will be dairy-free. I discover this information by talking to the pharmacist, reading drug package inserts, and searching online.

If I can’t find a manufactured medication without lactose, I call my local accredited compounding pharmacy. I’m lucky enough to have worked at one and trust them to make my medication. Compounding pharmacies make custom prescriptions by using the active ingredient and customizing the fillings.

It’s an expensive process, often not covered by insurance, and not all medications, including Paxlovid, are able to be compounded if the active ingredient isn’t available for bulk purchase. I now take four compounded medications. Each prescription costs about $100 out of pocket per month. If I could get lactose-free manufactured medication, each prescription would cost about $20 per month. That’s a difference of well over $3,500 per year.

What happens if — as many doctors have suggested — I just take the medication with the lactose? Unfortunately, I can’t tolerate even a little bit of dairy. It’s not just some digestive discomfort for me. In fact, the last time I tried a medication with lactose in it, it resulted in a $6,000 ambulance ride and an emergency room visit. The issue isn’t solely the allergic reaction; it’s also an issue with my hypoparathyroidism.

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I take over a dozen medications daily, including calcium, vitamin D, and magnesium, which help support my calcium levels alongside my Yorvipath (palopegteriparatide) injection. To keep my calcium levels stable and my body in sync, I must take specific amounts of supplements along with my injection. When I ingest dairy, it sets off a chain reaction.

When the gut is exposed to something it’s intolerant or allergic to, it can cause symptoms such as stomach distress, indigestion, vomiting, diarrhea, and inflammation. These symptoms can lead to malabsorption of medications and supplements. If I don’t absorb enough of my calcium, magnesium, and vitamin D supplements, my calcium levels can crash.

Another concern is that vomiting and diarrhea can cause the body’s electrolyte levels to drop. Once my calcium crashes, so can my magnesium, potassium, sodium, and chloride, all of which support my calcium level. When this happens, I need to go to the hospital to get intravenous fluids. My medical team has directed me to go to the hospital whenever I get “stomach sick,” which means any ingestion of dairy leads to an expensive emergency room visit.

I wish I could storm drug companies and demand an alternative to lactose. I’ve begun reaching out to manufacturers who make the medications I take and ask them to consider making a specific lot without a lactose filler. Having a rare disease is expensive enough without having to pay extra because I struggle to find an allergy-free medication to take.

Note: Hypoparathyroidism 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 another 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 Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.