Sickle Cell Disease (SCD) patients often require higher doses of pain medications to get relief than the average person. It’s a balancing act with potentially serious drug adverse effects for the Sickle Cell patient. A Mae Jemison quote applies to the art and the science of medicine.
“The difference between science and the arts is not that they are different sides of the same coin even, or even different parts of the same continuum, but rather, they are manifestations of the same thing. The arts and sciences are avatars of human creativity.”
Here’s a question, “Would you give a SCD patient twice the daily recommended dose of a pain med? Three or four times the daily dose?
The answer is, “It depends on the SCD history of the patient that only the patient and their doctor know.”
Jay Harold recently posted an article on a new treatment for SCD. “New Treatment for Sickle Cell Disease & 4 Facts to Know,” states that:
- SCD affects approximately 100,000 Americans.
- SCD occurs among about 1 out of every 365 Black or African-American births.
What’s Sickle Cell Disease?
The term sickle cell disease1 (SCD) describes a group of inherited red blood cell disorders. People with SCD have abnormal hemoglobin, called hemoglobin S or sickle hemoglobin, in their red blood cells.
Hemoglobin is a protein in red blood cells that carries oxygen throughout the body.
“Inherited” means that the disease is passed by genes from parents to their children. SCD is not contagious. A person cannot catch it, like a cold or infection, from someone else.
People who have SCD inherit two abnormal hemoglobin genes, one from each parent. In all forms of SCD, at least one of the two abnormal genes causes a person’s body to make hemoglobin S. When a person has two hemoglobin S genes, Hemoglobin SS, the disease is called sickle cell anemia. This is the most common and often most severe kind of SCD.
Hemoglobin SC disease and hemoglobin Sβ thalassemia (thal-uh-SEE-me-uh) are two other common forms of SCD.
If you or your child has sickle cell disease (SCD), you should learn as much as you can about the disease. Your health care providers are there to help you, and you should feel comfortable asking questions.
SCD Patients should pursue a Healthy Lifestyle
Like all people, you or your child should strive to maintain a healthy lifestyle that includes:
- A nourishing diet
- Enough sleep
- Regular physical activity
People with SCD often tire easily, so be careful to pace yourself and to avoid very strenuous activities.
Don’t smoke and try to avoid second-hand smoke. If you drink alcohol, do so in moderation and drink extra water to avoid dehydration.
Prevent and Control Complications
Avoid situations that may set off a crisis. Extreme heat or cold, as well as abrupt changes in temperature, are often triggers. When swimming, ease into the pool rather than jumping right in.
Avoid overexertion and dehydration. Take time out to rest and drink plenty of fluids.
Do not travel in an aircraft cabin that is unpressurized.
Take your medicines as your doctor prescribes. Get any medical and lab tests or immunizations that your doctor orders.
See a doctor right away if you have any of the following danger signs:
- Stroke symptoms
- Problems breathing
- Symptoms of splenic enlargement
- Sudden loss of vision
- Symptoms of severe anemia
If your child attends daycare, preschool, or school, speak to his or her teacher about the disease. Teachers need to know what to watch for and how to accommodate your child. (See “Tips for Supporting Students with Sickle Cell Disease”.)
Coping With Pain
Every person experiences pain differently. Work with your doctor to develop a pain management plan that works for you. This often includes over-the-counter medicines, as well as stronger medicines that you get with a prescription.
You may find other methods that help your pain, such as:
- A heating pad
- A warm bath
- A massage
- Physical therapy
- Distracting and relaxing activities, such as listening to music, talking on the phone, or watching TV
Living with SCD can be very stressful. At times, you may feel sad or depressed. Talk to your doctor or SCD medical team if you or your child is having any emotional problems. Tell your doctor right away if you or your child is feeling very depressed. Some people find counseling or antidepressant medicines helpful.
You may find that speaking to a counselor or psychiatrist, or participating in a support group is helpful. When families and friends provide love and support to people with SCD, they can help to relieve stress and sadness. Let your loved ones know how you feel and what you need.
Managing Some Complications of SCD
Each person with SCD should have a home treatment regimen that is best suited to their needs. The providers on the SCD team usually help a person develop a written, tailored care plan. If possible, the person with SCD should carry this plan with them when they go to the emergency room.
When an acute crisis is just starting, most doctors will advise the person to drink lots of fluids and to take a non-steroidal anti-inflammatory (NSAID) pain medication, such as ibuprofen. When a person has kidney problems, acetaminophen is often preferred.
If pain persists, many people will find that they need a stronger medicine.
Combining additional interventions, such as massage, relaxation methods, or a heating pad, may also help.
If a person with SCD cannot control the pain at home, he or she should go to an SCD day hospital/outpatient unit or an emergency room to receive additional, stronger medicines and intravenous (IV) fluids.
Some people may be able to return home once their pain is under better control. In this case, the doctor may prescribe additional pain medicines for a short course of therapy.
People often need to be admitted to the hospital to fully control an acute pain crisis.
When taken daily, hydroxyurea has been found to decrease the number and severity of pain episodes.
Sometimes chronic pain results from a complication, such as a leg ulcer or aseptic necrosis of the hip. In this case, doctors try to treat the complication causing the pain.
While chronic pain is common in adults with SCD, the cause is often poorly understood. Taking pain medicines daily may help to decrease the pain. Some examples of these medicines include:
- NSAID drugs, such as ibuprofen
- Strong pain medicines, such as opiates
Other approaches, such as massage, heat, or acupuncture may be helpful in some cases. Chronic pain often comes with feelings of depression and anxiety. Supportive counseling and, sometimes, antidepressant medicines may help. (See coping and emotional issues.)
All children and adults who have SCD and fever (over 38.50 C or 101.30 F) must be seen by a doctor and treated with antibiotics right away.
Some people will need to be hospitalized, while others may receive care and follow-up as an outpatient.
Priapism (Not a good thing to have)
Priapism4 a prolonged erection of the penis. The persistent erection continues hours beyond or isn’t caused by sexual stimulation. Priapism is usually painful. Priapism is most common in men in their 30s.
Sometimes, a person may be able to relieve priapism by:
- Emptying the bladder by urinating
- Taking medicine
- Increasing fluid intake
- Doing light exercise
If a person has an episode that lasts for 4 hours or more, he should go to the hospital to see a hematologist and urologist.
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