Jacob's pediatric rheumatologist emailed me today to let me know that
Arthritis is in BOTH of Jacob's hips. The right is worse than the left.
This MRI was ordered a few weeks ago because when he had his 3 month visit with the rheum
she could feel there was stiffness in his hips. Three months prior to this she had noticed the same.
She said it was time to do an MRI to see what is going on in there.
Jacob in not having any pain what-so -ever with his hips. That is a good thing!! He is having
continuous pain in his heels though. After emailing the rheum back and forth, she decided
to have him do Humira weekly. I asked her if adding back in MTX would be an option, but she
wants to give the Humira weekly for now. If he continues to have pain and troubles we will
have no other option than to go with the MTX again.
Jacob is not happy about the shot being weekly. He has not been doing well with the 40 mg dosage. It is extremely painful for him now.
I am trying to make sense off this all. I don't know why I feel so surprised when something pops up again and again. Each time things seem to get quiet it's like you let your guard down then BAM! It's back. Now with this hip involvement I feel more fear for his future. This disease isn't going anywhere. We are 7 years in and there is no end in sight. A lot of emotions are running through my head tonight. After a good nights rest, I will be ready to fight again.
Please pray for all the kids dealing with this disease. As Jacob said tonight "I am sick of this stupid arthritis".
6 comments:
I'm sorry to hear that you are all dealing with more joints. Hang in there.
All my love to you and Jacob. :( The 40 mg Humira sucks, Jackson hates it. I can't imagine him getting it weekly. Poor kid. Please know that I'm here for you always! And I can't wait to meet you one day!!
I read your blog all the time and your post tonight really struck an emotional cord with me. I'm 27 and was diagnosed with JRA at age 7. I had my first hip replacement when i was 22 and the next at 24. They told me at age 13 I would need them replaced. I can tell you that the journey with JRA is very tiring and at times it feels relentless, just know there is still room for him to have a wonderful life. I do. My Mother is an amazing source of support if you ever needed to vent. She is an ambassador at CHLA and an incredible woman. Just know that even if you can't understand or fix anything to do with Jacob's JRA support and love have ALWAYS proved more effective in healing than anything they prescribe. You're doing a wonderful job.
-Katie
I am so sorry to hear the news.There are treatments surely and I am sure that the situation is going to get better by the day.
I can SO RELATE to your post. My son is 14 and he is totally sick of this disease too. He is on weekly methotrexate and enbrel--- haven't tried humira yet.
Hang in there, and know you are not alone!
thank you everyone!
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