Wednesday, June 30, 2010

2 year mark for Uveitis remission

Jacob had his 6 week follow-up with Dr. Foster today. This visit marked the 2 year medicated remission for Jacob's uveitis. His eyes are completely clear!

Two years ago, Jacob was in the midst of a uveitis flare-up that was uncontrolled. He had been
treated initially with NSAIDS that produced no results. He then moved onto Methotrexate, a chemotherapy drug. This produced no results either. During the Methotrexate and NSAID therapy he was also on steroid drops. Jacob was unable to achieve a steroid free remission with this medication combo. His eyes continued to flare as we tried to wean the drops. The decision
was made to add to the Methotrexate another drug called Humira. Humira is a drug that is classified as a TNF antagonist. This stands for Tumor Necrosis Factor. Once the Humira was added Jacob went into remission. We were told 2 years ago, that once he achieved remission that
he would continue to be on this combination for a full 2 years before weaning would be considered. I remember thinking 2 years was so long!! Now here we are! Full 2 years off steroids.

As far as his eyes are concerned we have the go ahead to wean on the meds. This needs to be determined by the rheumatologist though. We are scheduled to see her on July 19th. Jacob's joints have been doing very well except for the one swollen toe. One toe. So now we wait for the appointment in July to see what she says.

We have graduated to seeing the eye doctor every eight weeks instead of every six. Uveitis is a disease that isn't to be taken lightly. It can come back at any time. The effects can be devastating. Jacob is very fortunate that his eyes have been very responsive to treatment. We shouldn't forget that still today, 10% of children will go blind from the disease. This is improved from fifty years ago when 50% of the children went blind. Proper care and diagnosis is so critical in preserving sight with this disease.

Saturday, June 5, 2010

swollen toe

I took this picture of Jacob's toe two weeks ago. The last time we were at the rheumatologist she said that there was inflammation in his 2nd toe. The toe seems really stiff and it won't bend. I sent an email to his rheumatologist with this pic and we are going to wait until his July appointment to check him. The toe doesn't bother him at all.

Juvenile Arthritis Conference

The Juvenile Arthritis Conference is the Arthritis Foundation’s signature, nationwide event for families affected by juvenile arthritis. Join us for this three-day education event that focuses on health, wellness and fun for children affected by arthritis, lupus, myositis, ankylosing spondylitis and other rheumatic diseases. The whole family is invited! Specific educational 2010 tracks focus on issues relating to parents, teens/young adults, children affected by arthritis and their siblings. The Juvenile Arthritis Conference offers a chance to meet other families going through similar challenges, share stories, learn new techniques for managing juvenile arthritis and have fun!
I just wanted to post this on my website, for all who may be interested. The yearly conference is coming up this summer. More info can be found at . I would of loved to go this year, especially considering it is not too far away! I am unable to go though. It seems like it would be a great experience to learn more about JA as well as meet other families going through this.