Living with sickle cell disease, I rely on several medications and treatments for various situations.
In general, I take medications for my own well-being, as research shows that sickle cell patients who struggle to comply with medication regimens tend to experience a lower quality of life. Ergo, to have the best quality of life I can despite this debilitating disease, I must be compliant with my medication regimen.
My medication is essentially split into three groups: daily medication, pain relief, and other treatments. I am sharing them with you to demonstrate the complexity of treating sickle cell disease and its related complications. The following list of treatments is not meant to be a recommendation. Always consult your doctor before taking any medications.
My daily medications
Erythromycin: As a result of sickle cell disease, I have a significantly weakened immune system. Common illnesses can have severe adverse effects on my health.
In sickle cell patients, the spleen is unable to fully function to remove bacteria and viruses from the blood. Consequently, sickle cell patients often take a prescribed antibiotic daily to prevent infections caused by pneumococcal bacteria. Most sickle cell patients take penicillin, but that doesn’t work for me, so I take erythromycin.
Folic acid: Normal red blood cells in healthy people live and circulate in the body for 100-120 days. This time frame is significantly shortened in sickle cell patients, as our red blood cells live for only 10-20 days.
As such, it is vital for my body to continue to produce new red blood cells. Folic acid helps with the production of new red blood cells, which is why sickle cell patients take folic acid daily.
Rivaroxaban: Most sickle cell patients would not take this medication daily. It is an anticoagulant I take as a result of damage caused by sickle cell, rather than a treatment for sickle cell itself. A few years ago, I unfortunately experienced a pulmonary embolism as a result of sickle cell complications. This medication thins my blood to prevent future clotting.
Desferrioxamine: This also is not a medication most sickle cell patients would take daily, because it treats sickle cell’s related complications rather than treating sickle cell directly. For a significant part of my early adult life, I received top-up blood transfusions to treat my sickle cell disease. With top-up blood transfusions, a few units of blood are delivered through a cannula usually inserted into the hand.
One risk of this treatment is that each bag of blood contains some iron, so over a prolonged period, this iron builds up. The body then struggles to excrete large amounts of iron. This risk is referred to as iron overload, and the body needs iron chelation therapy to help excrete the excess iron. Desferrioxamine is the iron chelation therapy I use.
It is somewhat different than my other medications, which are all orally taken. Desferrioxamine is delivered via a pump infuser. I connect the medication pump to a subcutaneous needle and inject it into my body. It takes about 16 hours to infuse, so I carry it around with me during the day, which affects my wardrobe choices. Generally, I function well with it attached, and I tend to forget it is there until somebody stares at it awkwardly. I use this six days a week.
The main symptom of sickle cell disease is pain, called a sickle cell crisis. I find it difficult to articulate how the pain feels, although I sometimes describe it as a stabbing sensation with hundreds of knives. The pain can happen at any time, so it is important I have adequate pain relief options at home to address crises. I have standard painkillers such as paracetamol (Tylenol in the U.S.) and ibuprofen, and also stronger pain relief such as codeine phosphate, naproxen, and both slow-release and immediate-release morphine sulfate and oxycodone.
Exchange blood transfusion: This differs slightly from the top-up blood transfusion in that my sickle blood is slowly removed from my body and replaced with donor blood. The good thing about this process is that the risk of iron overload is alleviated. I have these once every four weeks.
Oxygen: Oxygen therapy is a treatment that provides the body with extra — you guessed it — oxygen. This can be beneficial for sickle cell patients with low oxygen levels in treating crises or sickle cell complications.
It has risks, as high oxygen levels can suppress the production of new red blood cells. I have oxygen tanks at home, but I seldom use them due to this risk. They are reserved for when I have difficulty breathing at home or if I will be in an environment where I expect lower oxygen levels, such as when flying on a plane.
Note: Sickle Cell Anemia 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 Anemia News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sickle cell anemia.