Jacob's uveitis and JRA Journey: Awareness

Thursday, March 8, 2012

Awareness

1 comments:

Anonymous said...: I feel for your son! I have a very similar case. I am 21 now and was diagnosed with JRA at age 3 1/2. Knees, hips & ankles are my affected joints. Three years ago I was diagnosed with uveitis. I was on prednisone for 7 months, switched to mtx 25mg/wkly and then a few months later my rheumatologist added 40mg/bi-wkly to the mix. I'm currently being weened off of the mtx. I've had a lot of problems with nausea, vommitting, etc with it :( no fun!! I'm glad to hear that your son's eye inflammation is doing well. It's a scary thing when your eyes become affected. And as for the JRA, did the doctors say there is still a chance that he will outgrow it? I noticed that you stated you saw a doctor in Cambridge, MA. I saw pedi rheumatologists at Floating Hospital at NEMC in Boston for 18 years. They are awesome there!! I wish you guys the best of luck with everything!! Keep your heads up!; July 8, 2012 at 4:09 PM

Jacob's story

This blog is about my son Jacob. Jacob has Juvenile Arthritis. He was diagnosed soon after he turned 5. He is now 13 years old. His journey started with me noticing a limp and a swollen knee. We were referred to a pediatric rheumatologist soon after. Initially, Jacob just complained of his knee hurting and being stiff. He received cortisone injections in May of 2004 and was weaned off of the Naproxyn he was on, soon after. All was quiet with his arthritis until January of 2008 when his knee out of nowhere was swollen again. He had some problems with his fingers and ankles as well. He was started back on Naproxyn and scheduled for a eye exam. At his routine eye exam he was diagnosed with uveitis. Uveitis is a eye disease that is caused from Juvenile arthritis. Jacob sees a uveitis specialist in Cambridge, MA every 8 weeks. His eyes have been cell free since June 2008. He was treated with the combination of Methotrexate 17.5 mg and Humira 20mg every other week. He has not been on steroid eye drops since the springtime of 2008. Beginning in the summer of 2010 we began to taper the methotrexate. He began to take it bi-weekly. He was tapered off the med completely as of January 2011. His joints have remained relatively quiet. This past February 2011, he was found to have some stiffness/inflammation in his hip. He also continues to have a couple of swollen toes as well. He is pain free at the moment and continues to take only Humira for meds. Jacob is considered to have Extended Oligoarthritis.
UPDATE: July 22, 2011 An MRI confirms arthritis in both hips. Humira 40mg will be given weekly. He has no pain in his hips. But is having pain in his heels.
Update: December 2012 Back on "Humira. Eye flare up, knee swollen and MRI confirms again arthritis is active in his hips.
Update: Feb 2013 Failed Humira. Joints and eyes flared and he isn't responding to Med. Started Remicade Feb. 1, 2013.

Jacob's uveitis and JRA Journey

Thursday, March 8, 2012

Awareness

1 comments:

Jacob

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