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Sickle Cell Disease Program
Sickle cell Transition Education Project (STEP)

Pain

1. Staying Healthy  |  Take the test
2. Hydroxyurea  |  Take the test
3. Dealing with Pain
4. Pain Medications


Staying Healthy

It is very important to remember that there are things that you can do to try to stay healthy and avoid pain crisis.
  • Drink at least 2-3 liters (70-100 oz) of water daily (equals about 4-6 bottles of water)
  • Eat a well balanced diet
  • Don’t smoke, drink alcohol, or use street drugs
  • Sleep 8-9 hours every night
  • Avoid very hot or cold weather
  • Go to your doctor for regular check-ups
  • Take your prescribed medicines every day
  • Get your influenza (flu) vaccine every fall

You also need to know your limits. People with sickle cell disease should avoid certain activities. However, remember the list of things that you can do is much longer! If you have any questions about a specific activity ask your doctor. You know your body best, so with experience, you will find what activities are best for you.

Take the LIMITS test


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Hydroxyurea

Hydroxyurea is currently the only approved drug to treat sickle cell disease.  Hydroxyurea has helped many people living with sickle cell disease.

Not all people with sickle cell disease should take hydroxyurea, but all people with sickle cell disease should know these facts about hydroxyurea:
  • Hydroxyurea has been proven to decrease pain crisis and other complications in both children and adults with sickle cell disease
  • Hydroxyurea is a safe medication when given by experienced doctors and with monitoring of blood counts
  • Hydroxyurea must be taken everyday to work
Talk to your doctor about hydroxyurea and if it is right for you.

Test your knowledge about hydroxyurea

Check out how hydroxyurea can change your red blood cells! These three pictures were taken at different times using a microscope looking at the blood of a person with sickle cell disease.

This picture was obtained before hydroxyurea treatment. Many sickle shaped red blood cells are present.
This picture was obtained before hydroxyurea treatment. Many sickle shaped red blood cells are present.

This picture was taken while the dose of hydroxyurea was being increased. Only a few sickle shaped red blood cells are seen.
This picture was taken while the dose of hydroxyurea was being increased. Only a few sickle shaped red blood cells are seen.

This picture was obtained after hydroxyurea was increased to a maximum dose after months of treatment. No sickle shaped red blood cells are now there and the red blood cells look bigger.
This picture was obtained after hydroxyurea was increased to a maximum dose after months of treatment. No sickle shaped red blood cells are now there and the red blood cells look bigger.

This change in your blood takes time and you need to take your hydroxyurea every day for it to occur.

Pictures courtesy of Dr. Russell Ware, St. Jude Children’s Research Hospital. How I use hydroxyurea to treat young patients with sickle cell anemia. Blood. 2010; 115(26):5306.


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Dealing with Pain

Relaxation techniques can help when pain hits you. Try these techniques:

1.  Think of a calm and happy place—an empty beach, a bright blue sky with clouds, or a mountain sunset. Think of details in this place—sounds you enjoy, things you like to touch, taste, and smell.

2.  Deep breathing. As you inhale, think about fresh air coming slowly intro your chest, out to your fingers and down to your toes. As you breathe out, imagine that any tension that may have been stored in your arms, neck or shoulders is moving from your body and out into space.

3.  Muscle exercises. Get in a comfortable position in a relaxing place. Tighten the different muscles in your body and then relax them, allowing them to go limp. Start with making a fist and then releasing your fingers. Slowly move on to your arms, shoulders, neck, face muscles, toes, legs, and stomach.

Stress. Stress can trigger pain and make existing pain even worse. Learn how to mange your stress. Figure out what works for you.

Support system. A support system is a network of people who help you when you are going through difficult times. Individuals can have different groups of people as a support system. Having a group of people who you can turn to for help is critical. Build up your support system.


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Pain medications

There are many different pain medications. You will find that certain medications may work better for your pain. You should know these basic facts about different pain meds:

Acetaminophen (trade name Tylenol). You can buy it over the counter (OTC). It can reduce fever. An adult should never take more than 4000 mg of acetaminophen (eight 500 mg pills) in a 24 hour period because too much acetaminophen can cause serious liver problems. Some medications (Tylenol#3, Percocet, Vicodin) combine acetaminophen with another drug. Make sure you read how much acetaminophen your medications contain to ensure that you are not taking too much.

Ibuprofen (trade names Motrin, Advil). You can buy it over the counter (OTC). It is a type of medicine called a nonsteroidal anti-inflammatory drug (NSAID). It can reduce fever. Side effects: can cause stomach upset and ulcers; can increase bleeding. Do not take if you have ulcer, bleeding, or kidney problems. Another NSAID, Ketorolac (trade name Toradol) is often given via IV when someone with sickle cell disease has crisis.

Opiate medicine (also called narcotics). There are many different opiate medications including codeine, hydrocodone, oxycodone, morphine, and dilaudid. You need a prescription for these drugs. Side effects: constipation, itching, nausea, drowsiness/impaired thinking. When you start taking an opiate for new pain, you should also take a medicine to prevent constipation (like Miralax). If you take opiates on a regular basis you will develop tolerance.

What is tolerance?
Tolerance is a term used to describe a process that occurs when the body becomes less responsive to a drug after repeated exposure. For example, a person who has never received morphine will likely obtain good relief of pain with 2 mg of morphine.  However, a person who has previously received morphine many times may need 8 mg of morphine to obtain the same pain relief. The body becomes used to opiates if they are given over time and higher amounts of the drug are needed to achieve the same effect.  The body can even become physically dependent on opiates.

What is the difference between physical dependence and addiction?
Physical dependence occurs when the body becomes so used to receiving narcotics over time that if a person stops taking narcotics, he or she will become sick—have withdrawal symptoms. A person who is physically dependent on a narcotic is not necessarily addicted to narcotics. Addiction refers to a compulsive desire to use a drug despite negative consequences. A person addicted to opiates might lie or steal to obtain opiates and continues to use opiates at the expense of family, friends, and their health.  A person who is taking opiates to treat pain is not an addict. While many people with sickle cell disease develop some tolerance to opiates, most people with sickle cell disease do not become addicted to opiates. 



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