JUVENILE RHEUMATOID ARTHRITIS
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Facts: Juvenile Rheumatoid Arthritis (JRA) is an autoimmune a disease which causes joint swelling and inflammation in a child under 17 years old for 6 months or more. The body's immune system mistakes normal joints and cartilage as foreign matter and attacks the tissue. Doctors don't know what causes JRA, but it may be a combination of a genetic propensity towards the disease followed by a trigger such as a virus. JRA is not contagious. JRA can cause problems ranging from fairly limited discomfort to severe permanent joint damage. Even from day to day the disease may have radically different effects. Treatments include special exercises, physical therapy, pain management, joint replacement, and many types of drugs (NSAIDs (non-steriodal anti-inflammatory drugs) such as Aspirin, pain killers such as Tylenol, disease modifying drugs such as Enbrel, and steroidal drugs such as Prednisone). JRA sometimes goes into remission as a child grows into adulthood, however it may continue indefinitely.

My Story: I was diagnosed with JRA when I was twelve. My right knee was swollen. Three months later, the disease had spread into most of my joints: knees, ankles, wrists and hands. Since then I have been treated with Aspirin, Telectin, Prednisone, Plaquinel, Methotrexate and Enbrel.

I'm 24 now. I've had my ups and downs. I didn't "grow out" of JRA the way we all hoped I would. My joints are badly damaged; the knees are the worst. For two years I have been using a wheelchair, I cannot stand up at all. However, I have been able to become more active in the past few months, so now I can roll around easier and exercise more than I have in quite a while. I especially enjoy swimming, air hockey, ping pong and tennis. I wish I didn't suck at wheelchair basketball, but I do. Someday I hope to have a double knee reaplcement, but with SSDI, Medicaid and insurance stuff, it may be a few more years. I am looking forward to doing all the things the doctor tells me I shouldn't do on artificial knees!

I take Enbrel twice a week. I inject it into my thigh; I just can't stand the thought of shots in my belly, even though everyone tells me it doesn't hurt. I have some advice for everyone who takes Enbrel- ask your doctor to prescribe you a smaller needle. I use a 28 gauge 3cc syringe. This is SO much smaller than the one in the Enbrel package, no more STABBING myself for half an hour :-)

My recent improvement, however, is due to changes in my diet. I became a vegetarian, and am making sure I get enough protein. I can't say enough good things about SOY MILK. I drink Sun Soy original flavor and Carnation chocolate instant breakfast at least once a day. I also eat a lot of soy products- some of the best are Morningstar Farms (meatless) Chick Patties and Meatless Crumbles and Nate's meatless meatballs. I am so amazed that I live in an age where a vegetarian can have sausage, bacon, burgers, and meatballs. And I tried some of this stuff a few years ago and saying they tasted like cardboard would taking it easy on them. Now even my boyfriend likes it. He tells me "It tastes like meat, only not as tough and dry." So soy milk, Enbrel, air hockey and hot baths are my comprehensive JRA treatment plan.

These were my experiences with these medications. Don't make any assumptions from these, everyone reacts differently, and you should discuss side effects with your doctor.

Aspirin upset my stomach, and it barely did anything.
Telectin made me TERRIBLY sick. I threw up every morning, and barely weighed 90 pounds.
Prednisone worked well. I also gained quite a bit of weight. However, this drug can cause serious health problems. Stopping the drug was terrible. You need to be weaned off Prednisone VERY slowly under doctor's supervision, and even then I had trouble. This drug can cause mental problems, depression, and even psychosis. If you feel "shaky" on this med, tell your doctor immediately. Many patients aren't aware of the possible side effects.
Plaquenil did nothing for me.
Methotrexate was the first drug to really work well for me. After a while it began to upset my stomach, though.
Enbrel packs a punch. It is the only medicine I still take. When I first took this medicine, I could move better than I had in years WITHIN AN HOUR. However, it's takes a bit longer for me to get over illnesses since I started taking Enbrel.

 

That's all I have to say about that. If you have comments or questions, feel free to email me. Even better, drop by the JRA Support Message Board. We'd love to meet you.

 
JRA Resources

JRA and Joint Diseases Support Discussion Board - This is a message board we started for people with JRA and other joint diseases. This is a great resource, especially when you feel alone, and just want to talk to, complain to or ask someone who understands. There are several adults at the board who continue to have JRA symptoms.

Myra's JRA Site - A great personal site with lots of info and links. Definitely worth a visit.

Juvenile Rhuematoid Support - A support site aimed at adults living with JRA.

JRA at KidsHealth - An introduction to JRA for parents dealing with a possible JRA diagnosis.

Childhood Arthritis at iVillage - A very friendly message board for parents.

If you have a site you'd like to see listed here, please email me.