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Limit-JIA Clinical Trial
Treating JIA to Slow its Spread
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What is Limited JIA?
JIA can be very difficult to diagnose. No one test can confirm the diagnosis, so doctors need to use a few tests and a physical exam to rule out any other reasons for a child’s joint pain. So what does having JIA look like and how will it affect your child?
The word “arthritis” means inflammation (swelling) and stiffness of the joints. Arthritis that affects children under the age of 16 is known as juvenile idiopathic arthritis, or JIA. Oligoarticular JIA (also known as limited JIA) is the most common type of JIA. It affects four or fewer joints during the first six months. After the first six months, some patients may have more than four joints affected; this is called extended oligoarticular JIA.
Over time, patients with limited JIA notice that their joints are more affected by arthritis. Patients will experience pain, swelling, stiffness, and possibly even damage to the joint bones and cartilage. Over time, certain joints may need to be replaced.
JIA can also affect a patient’s eyes, so children need to visit an eye doctor right after they are diagnosed and often after that to make sure they do not have eye disease connected to their arthritis. Thankfully, after the long process of getting a diagnosis, you can begin treating JIA right away to slow or pause its progression (spreading).
There are many effective treatments that can allow your child to live a happy and healthy life, and in his or her lifetime, your child will try many of them. Medication for arthritis in children has improved a lot in recent years, and research is helping us learn more about the condition all the time.
How is Limited JIA Treated?
Because limited JIA affects only a few joints, doctors often start treatment with injections of medicine into the swollen joints. These injections can be paired with other drugs to reduce swelling, such as ibuprofen (Advil, Motrin) or naproxen (Aleve, Anaprox, Naprosyn), which are called non-steroidal anti-inflammatory drugs.
Some medications for oligoarticular JIA are: Non-steroidal, anti-inflammatory drugs (NSAIDs), such as ibuprofen, to ease pain and lower inflammation. These are taken in tablet or liquid form. Corticosteroids, such as prednisone, can lower swelling. These can be given as tablets, liquid, injection into the joint, or drops into the eye. Disease-modifying, anti-rheumatic drugs (DMARDs), such as methotrexate, may stop arthritis from spreading and can be taken in tablet form, liquid form, or by injection.
These are some of the most common treatments for oligoarticular JIA, meaning they are usual care. Even with usual care, JIA can still spread and get worse. About half of all oligoarticular JIA patients will experience disease spreading to more joints, uveitis (inflammation of the eyes), or both. Researchers working with parents are exploring options which may be more effective at preventing the disease from spreading than usual care.
The Limit-JIA Clinical Trial is using abatacept (Orencia™), a biologic disease-modifying, anti-rheumatic drug used to treat JIA when it starts affecting joints. In this case, we believe using abatacept earlier in treatment will prevent JIA from spreading.
How is Limited JIA Treated?
Because limited JIA affects only a few joints, doctors often start treatment with injections of medicine into the swollen joints. These injections can be paired with other drugs to reduce swelling, such as ibuprofen (Advil, Motrin) or naproxen (Aleve, Anaprox, Naprosyn), which are called non-steroidal anti-inflammatory drugs.
Some medications for oligoarticular JIA are: Non-steroidal, anti-inflammatory drugs (NSAIDs), such as ibuprofen, to ease pain and lower inflammation. These are taken in tablet or liquid form. Corticosteroids, such as prednisone, can lower swelling. These can be given as tablets, liquid, injection into the joint, or drops into the eye. Disease-modifying, anti-rheumatic drugs (DMARDs), such as methotrexate, may stop arthritis from spreading and can be taken in tablet form, liquid form, or by injection.
These are some of the most common treatments for oligoarticular JIA, meaning they are usual care. Even with usual care, JIA can still spread and get worse. About half of all oligoarticular JIA patients will experience disease spreading to more joints, uveitis (inflammation of the eyes), or both. Researchers working with parents are exploring options which may be more effective at preventing the disease from spreading than usual care.
The Limit-JIA Clinical Trial is using abatacept (Orencia™), a biologic disease-modifying, anti-rheumatic drug used to treat JIA when it starts affecting joints. In this case, we believe using abatacept earlier in treatment will prevent JIA from spreading.
Support Resources & Video Testimonials
PREPARING FOR INJECTIONS
Kid’s Perspective
THE DIAGNOSIS JOURNEY
Kerry’s Perspective
ONE APPROACH TO INJECTIONS
Catherine’s Story
THINKING THROUGH INJECTIONS
Kid’s Perspective
THE DIAGNOSIS JOURNEY
Laura’s Perspective
JIA IN A FEW WORDS
Young Adult Perspective
THE DIAGNOSIS JOURNEY
Marcela’s Story
INJECTION DISTRACTION TECHNIQUES
Kid’s Perspective
What is the Limit-JIA Clinical Trial?
The Limit-JIA trial lasts a total of 12 months. During that time, your child will be given six months of weekly abatacept injections followed by six months of usual care.
The study also involves a few scheduled visits. There will be one screening visit to see if your child is a good fit for the clinical trial, one check-up visit, four scheduled appointments (three months apart), and two to four ophthalmology (eye doctor) visits (depending on the participant). There may also be additional doctor’s visits, as needed. Finally, parents will be asked to complete surveys related to their child and keep record of all medications their child takes for their JIA.
Benefits and Disadvantages
If you choose to join the study, there are pros and cons related to participation. Let’s weigh the choices.
Benefits include: Education, support, and feeling good about helping researchers; Close follow-ups from the care staff; Access to treatment not available to others; Treatment provided at no cost; A chance to help other patients with JIA.
Disadvantages include: Chance of having side effects from taking the study drug abatacept; Chance the drug will not work; Taking additional time for activities like surveys, etc.
Discussion Guide
To learn more about the study, you can talk to study coordinators (people who help patients before and during the clinical trial. Here are some questions you may want to ask the coordinator. More questions—and answers!—can be found in the Frequently Asked Questions section.
How long is the trial?
How often do I have to visit the study site (doctor’s office)?
How long will each visit take?
What else do I have to do while in the study?
What are the short-term side effects of abatacept?
What are the long-term side effects of abatacept?
Are there other treatments for my child’s condition?
Will the lab tests cost me anything?
Will I get the results of the tests?
Will I get any money for joining the clinical trial?
Will I get the study drug once the trial is over?
What if I have a problem with how I am treated during the clinical trial?
What is Uveitis?
In addition to joint inflammation (arthritis), eye inflammation (called uveitis) can develop in children with JIA. If not treated, uveitis can cause vision loss or blindness. Children with uveitis often do not have symptoms, such as pain, redness, or trouble seeing, so regular eye exams by a pediatric eye doctor (ophthalmologist) are necessary.
Eye Exams
The eye doctor will use special equipment to magnify the structures in the eye to see if there is inflammation or damage. The eye doctor will perform a “slit-lamp” exam—a painless test where a green light is shined through a microscope to examine the inside of the eye. If there is inflammation, the doctor will report the number of cells that they see. The number of cells indicates the amount of eye inflammation present. Sometimes eye drops are used to enlarge the eye to make it easier to see inside.
How Often
Children with oligoarticular JIA have the highest chance of developing uveitis and need to be checked by the eye doctors most often, however uveitis happens in all forms of JIA. Depending on your child’s JIA type, age, and antinuclear antibody (ANA) status, they may need to be checked every three months. Eye exams can detect inflammation early, so that treatment can start before permanent damage and vision loss.
Treatment
If the eye doctor finds uveitis, your child will need treatment. Common treatments include prescription eye drops and medications similar to those used to treat arthritis. Your eye screening interval will be determined by your rheumatologist.
If you have concerns about your child’s eyes or vision do not wait until your next visit. Contact your eye doctor immediately.
What is the Limit-JIA Clinical Trial?
The Limit-JIA trial lasts a total of 12 months. During that time, your child will be given six months of weekly abatacept injections followed by six months of usual care.
The study also involves a few scheduled visits. There will be one screening visit to see if your child is a good fit for the clinical trial, one check-up visit, four scheduled appointments (three months apart), and two to four ophthalmology (eye doctor) visits (depending on the participant). There may also be additional doctor’s visits, as needed. Finally, parents will be asked to complete surveys related to their child and keep record of all medications their child takes for their JIA.
Benefits and Disadvantages
If you choose to join the study, there are pros and cons related to participation. Let’s weigh the choices.
Benefits include: Education, support, and feeling good about helping researchers; Close follow-ups from the care staff; Access to treatment not available to others; Treatment provided at no cost; A chance to help other patients with JIA.
Disadvantages include: Chance of having side effects from taking the study drug abatacept; Chance the drug will not work; Taking additional time for activities like surveys, etc.
Discussion Guide
To learn more about the study, you can talk to study coordinators (people who help patients before and during the clinical trial. Here are some questions you may want to ask the coordinator. More questions—and answers!—can be found in the Frequently Asked Questions section.
How long is the trial?
How often do I have to visit the study site (doctor’s office)?
How long will each visit take?
What else do I have to do while in the study?
What are the short-term side effects of abatacept?
What are the long-term side effects of abatacept?
Are there other treatments for my child’s condition?
Will the lab tests cost me anything?
Will I get the results of the tests?
Will I get any money for joining the clinical trial?
Will I get the study drug once the trial is over?
What if I have a problem with how I am treated during the clinical trial?
What is Uveitis?
In addition to joint inflammation (arthritis), eye inflammation (called uveitis) can develop in children with JIA. If not treated, uveitis can cause vision loss or blindness. Children with uveitis often do not have symptoms, such as pain, redness, or trouble seeing, so regular eye exams by a pediatric eye doctor (ophthalmologist) are necessary.
Eye Exams
The eye doctor will use special equipment to magnify the structures in the eye to see if there is inflammation or damage. The eye doctor will perform a “slit-lamp” exam—a painless test where a green light is shined through a microscope to examine the inside of the eye. If there is inflammation, the doctor will report the number of cells that they see. The number of cells indicates the amount of eye inflammation present. Sometimes eye drops are used to enlarge the eye to make it easier to see inside.
How Often
Children with oligoarticular JIA have the highest chance of developing uveitis and need to be checked by the eye doctors most often, however uveitis happens in all forms of JIA. Depending on your child’s JIA type, age, and antinuclear antibody (ANA) status, they may need to be checked every three months. Eye exams can detect inflammation early, so that treatment can start before permanent damage and vision loss.
Treatment
If the eye doctor finds uveitis, your child will need treatment. Common treatments include prescription eye drops and medications similar to those used to treat arthritis. Your eye screening interval will be determined by your rheumatologist.
If you have concerns about your child’s eyes or vision do not wait until your next visit. Contact your eye doctor immediately.
Stay Updated
Provide your information to be notified when the results of the Limit-JIA study are available.