Jacob's uveitis and JRA Journey: Are you going?

Sunday, January 9, 2011

Are you going?

We are hoping to go this year! Are you going? It would be a great opportunity to meet some other JRA families as well as see DC with the boys.

2 comments:

Courtney said...: I wish that I could say we were going but sadly this year we are not. I hope that one day we can make it because I think it would be wonderful to be around others that "get" it!!; January 9, 2011 at 12:35 PM
Erika said...: Its on my to do list to go some year... I would like Charlotte to go, so 5 may be too young, same with 6, but some year we are going!

What a great oppty for you & the boys! Can you take a train down? Maybe not, maybe that's just from NYC :) But wouldnt that be fun?

Please share all that you learn on your blog, would love to read about all the details!!!; January 17, 2011 at 5:33 PM

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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

Sunday, January 9, 2011

Are you going?

2 comments:

Jacob

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Jacob's story

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