What my sickle cell medication regimen currently looks like

Back in 2020, I shared details of my medication regimen at the time to treat my sickle cell disease. Since then, I’ve had a few changes in my health status.

Thankfully, I successfully overcame my battle with iron overload, a serious side effect of sickle cell disease. But the bad news is that I’ve experienced a progression of avascular necrosis in my hips and shoulders. These health changes have affected my medication regimen, so I wanted to provide readers with an update on how it stands now.

My daily medications

Erythromycin: Sickle cell patients are immunocompromised, so the risk posed by common infections is generally higher than in healthy people. With sickle cell patients, unfortunately, the spleen struggles to adequately remove bacteria from the blood. Therefore, most sickle cell patients are prescribed a long-term antibiotic. In my case, this is erythromycin, which boosts my immune system and helps my body fight infections.

Folic acid: Folic acid assists the body in producing red blood cells. A normal red blood cell lives for about 120 days. In sickle cell patients, a significant number of our red blood cells aren’t normal, but rather are sickle-shaped. These red blood cells have a much shorter life span of about 20 days. So sickle cell patients are prescribed folic acid to increase production of red blood cells.

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Rivaroxaban: I take this medication due to a side effect of sickle cell, not because of the illness itself. In 2018, I suffered a pulmonary embolism, which is a blood clot that blocks the flow of blood to an artery in the lungs. Subsequently, I am required to take blood thinners, because prior history of blood clots is usually indicative of a long-term risk for more of them. Rivaroxaban is an anticoagulant I use to keep my blood thin enough to hopefully reduce the risk of clots.

Oxycodone: This is another medication I take due to a sickle cell side effect. However, it can also be used to treat an acute sickle cell crisis. The drug is a slow-release opioid that works over a 12-hour period to provide small amounts of pain relief to my system. This medication was prescribed to help me navigate the daily pain I suffer as a result of avascular necrosis in my hips and shoulders.

Treatments

Apart from my daily medications, the rest of my treatment regimen hasn’t changed since 2020. I continue receiving exchange blood transfusions and both at-home and portable oxygen therapy when my oxygenation rates are low.

I have an exchange transfusion every six weeks, which has been a lifesaver for me. On average it can take between 60 and 100 blood donors every year for me to receive this treatment.

Medication compliance

The importance of maintaining 100% compliance with my medication regimen cannot be overstated.

For many years, I thought total compliance was impossible. As a child, I used to hide my tablets after my parents had given them to me. While I was doing this, I was rarely sick, which made it difficult for me to accept that medication is a necessity. I just wanted to be a normal child.

As the years went by, I began to understand the purpose of each medication I am prescribed and how important they are to my survival and long-term quality of life.

From the age of 16 to about two years ago, my compliance ranged from 60%-90%. More recently, I have tried to move to 100% compliance. It has taken me some time to train myself and build habits and a routine to enhance my compliance. Now, I can finally say I am there.

If you are struggling with medication compliance, please don’t suffer in silence like I did. Please speak to your doctor or a family member to have an accountability partner. Also try scheduling your medication for the same time each day or after the same daily activity to build up a habit. For example, I always take my morning medications as soon as I wake up and my evening medications after dinner. It is now baked into my day.

Excellent compliance is one of the keys to healthy living with sickle cell disease.

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.