I Struggled to Take My Meds — Until It Affected My Pocketbook

In 2005, my doctors started me on a medication called hydroxycarbamide, also known as hydroxyurea, or “hydra.” It was prescribed to help me manage the symptoms of sickle cell disease.

Many people with sickle cell disease use hydroxycarbamide. Before my care plan changed to regular exchange transfusions, I used hydra for 14 years, and it served me well.

Hydroxycarbamide was initially used as a chemotherapy drug to help cancer patients. For sickle cell patients, it helps stimulate the production of fetal hemoglobin, which has several benefits, including a greater ability to carry oxygen throughout the body and to protect red blood cells and prevent them from turning into sickle cells.

When I was using the medicine consistently, it helped me greatly by reducing the number of crises I experienced, but I found that I had difficulty taking it consistently.

As someone whose health relied on using this medication every day for a long time, I was surprisingly pretty bad about using it consistently. I could go days, weeks, and even up to a month without taking my medicine.

I know, that’s scary, and the crises I experienced as a result were significant.

Hydroxycarbamide has a cumulative effect, meaning that if I go for some time without using it, I wouldn’t feel much different. But if I had a crisis and suddenly started taking it again, I wouldn’t suddenly improve. So, it was essential for me to take my medicine regularly.

I can’t tell you why I had trouble taking it. It didn’t take more than a minute to do, but it still felt like such a chore. Thankfully, my friends and family stepped up and helped to hold me accountable.

At times, I would even bet money! Each day I didn’t take my medicine, I would owe a friend £1 (about $1.40). Seeing the effect it had on my bank account felt more drastic than the effect it had on my body, so retaining my money was truly incentive enough.

I would love to hear your tips about how to take medicine consistently. If you are anything like me and you forget, or you just can’t be bothered, I hope this post may serve as a reminder and a gentle nudge to do the right thing.

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Note: Sickle Cell Disease 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 Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.