You have been told you have enthesitis-related arthritis. You may wonder what it is and what it means for you.
You may be scared or worried about how this will change what you like to do, what your friends might think, or your future plans for school or a career. Here is a quick guide to help you learn about your type of arthritis and what it means for you.
What is enthesitis-related arthritis?
Enthesitis-related arthritis (ERA) is one type of childhood arthritis.
Arthritis means “joint swelling” or “joint inflammation”. A joint is the space where two bones come together, such as an elbow or knee. Arthritis means this space becomes swollen and full of fluid. This can cause pain, stiffness and make it feel like your joints cannot move as well. The “E” in ERA stands for enthesitis. This means swelling or inflammation of the entheses (where tendons or ligaments attach to bone). People with ERA can have arthritis, enthesitis or both. In ERA, the hips, knees and feet can more commonly be affected by arthritis. Arthritis in the back (spondylitis) and sacroiliac joint (sacroiliitis) can also occur, but usually this occurs later. Arthritis in the sacroiliac joint, located at the base of the spine, can give you pain in the low back or buttock area. The pain becomes worse with rest and better with activity. Arthritis can also occur in the upper limbs. The shoulders are more commonly affected. Enthesitis can also lead to pain and swelling. If you have enthesitis, you may feel foot, heel, or knee pain, with or without swelling.
ERA tends to occur in late childhood or adolescence (eight to 15 years of age). It is seen more often in boys than girls.
ERA can be different from person to person. For some, it can be mild and run a short course. For others, it can be more severe and last a long time. Some people with ERA may be at risk for developing back inflammation in their adult years.
ERA is an autoimmune disease
Your immune system normally protects you by fighting infections, like a cold or flu. In an autoimmune disease like ERA, the immune system is confused and attacks the cells and tissues in your joints, tendons and the entheses causing inflammation. This inflammation leads to redness, swelling, pain, warmth, stiffness, or loss of movement in the joints. To help you feel better you will need to see a rheumatologist, a doctor that is specialized in autoimmune disease.
Treatment for ERA
You will meet your rheumatology team made up of doctors, nurses, physical therapists, social workers, dieticians and child-life specialists. They have a lot of experience treating people with ERA. You will see the team three to five times a year. How often depends on how you are doing.
You may need to take different kinds of medicine for ERA. Medication is used to:
- reduce inflammation of the joints and entheses
- take away pain and decrease swelling
- maintain function and movement of joints
- prevent damage to bone, cartilage, ligaments, and tendons within the joints
You may need to take these medicines for a short time, on and off for a number of years, or for many years. The amount of time you need to take the medicine depends on:
- how you are feeling
- if the doctor can see inflammation in your joints and entheses, by noticing swelling and warmth
- if the doctor can see evidence of inflammation in your blood
When taking medicines, ask yourself these questions:
- Do I know which medications I am taking?
- Do I know how much or the dose I am taking?
- Do I know why I am taking each of the medications?
- Do I know what will happen if I do not take the medications?
If you cannot answer these questions, please speak to your doctor. Make sure you understand what your medicines are and why you need to take them.
Taking medications can be irritating. It can be hard to remember to take them and some medicines can have side effects. Side effects are the unwanted effects of a medicine (such as stomach aches or nausea). Tell your doctor if you have side effects. Please do not stop taking your medicines, as stopping certain medicines suddenly can hurt your body and can be dangerous.
Talk to your doctor, nurse, pharmacist, or social worker about ways to make taking medicine easier and less painful.
To learn more about treatment and medicines, please read "Juvenile enthesitis-related arthritis: Treatment".
Smoking and drinking alcohol
While you are taking medicine for ERA, you should not take any kind of drug, including alcohol and tobacco. Drugs interfere with the medicines you are taking. The combination could damage your liver or kidneys.
Sex and birth control
If you are sexually active, then you need to know the following:
- Certain medicines for arthritis can be very harmful to unborn babies. Measures must be taken to prevent pregnancies. For both males and females, please talk to your doctor about birth control and contraceptives.
- Tell your doctor if you are sexually active or if you are thinking about it. Your doctor can help you choose the right method of birth control.
ERA and exercise
If you have been told you have ERA, it is important to exercise and remain active. Symptoms of pain, stiffness, and fatigue get worse during long periods of rest or inactivity. Symptoms improve dramatically with activity. Regular exercise for 20 to 30 minutes a day can do great things for you, such as:
- decrease pain and stiffness
- keep muscles strong and flexible
- develop strong muscles to support joints
- improve energy
Good posture and back mobility exercises are important. A physiotherapist can help you with this. They can also make suggestions about activities and sports that may help. It is important to choose activities that you enjoy and can do regularly.
To learn more about exercises and stretches for ERA, please read "Exercises for enthesitis and arthritis".
ERA and lifestyle for teens
It is important to remember that your life does not have to change too much if you have ERA. You may have to take medications to help get rid of inflammation, but you can still do the same things you did before. You can still go to school, do chores, play sports, and spend time with friends and family.
During a flare-up, ERA may make some activities harder because of the pain and stiffness in your joints. For example, teens whose knees, ankles, and feet are affected find that walking long distances and playing certain sports is a challenge. Try to take part in all your normal activities, but stop if it hurts.
These are some suggestions from teens who have experienced ERA:
- Morning stiffness is common. Try waking up a bit earlier to take a hot shower for 10 to 15 minutes.
- Apply heating pads and hot water bottles on areas that are painful and stiff.
- Stretch in the morning and during the day to keep joints moving well.
- ERA should not affect your life goals. Remember, the treatment for ERA helps you have a normal life and do things you want to do.
For more information, please see "Juvenile enthesitis-related arthritis: Living with ERA."
- Enthesitis-related arthritis (ERA) is an autoimmune disease that causes pain and swelling in the joints and the points where tendons and ligaments attach to bone (entheses).
- ERA is treated with medicine. Depending on your situation, you may need to take
medicine for a short time or for a longer time.
- Exercise is important to help you manage your symptoms and stay healthy.
- ERA may make some activities harder, but you can still do the same things you did before you were diagnosed with ERA.