Symptoms of JIA
Over the past month Rebekah has complained of some stiffness and numbness. The first time she had been reading in her room for a while, she told me her knees and stiff and sore and her fingers were stiff and numb. I thought maybe she had been sitting to long. A week or so later one day she complained of wrist pain. A while after that one day it was hip pain. I am keeping track of these symptoms to tell her rheum., but was wondering if anyone has seen anything start like this?
You are doing the right thing by keeping a log of symptoms. If you ever see swelling, take a picture. When you are at the rheumies, let the doc know what is going on. The blood work may show something, and it may not. It is like putting pieces of a puzzle together, but not actually having all of the pieces to work with at once.
If it is juvenile arthritis, the same meds that our kids use for uveitis work for arthritis.
I've been reading your other posts, and wish I could give you a hug. My daughters path of meds follow closely to Tricia's son, Jared's. My daughter never tried Remicade, but that was one of her last options (that or IvIg). I would sure try to take the oral meds first before moving onto biologics. Cost, and time of infusions are a big pain. Thank goodness they are there, though, if the other meds don't work.
Our kids are too much alike! Drew goes thru periods like this too and has been tested twice. So far, no JRA. I agree with Renee. Keep track and let rheum know.
Re: Symptoms of JIA
What other oral meds are options? Cellcept? She is already at her max dose of injectable MTX. I know that the cellcept is in the same catagory as the MTX. Are they used together? What other meds should I look at?
Re: Symptoms of JIA
What dose is she at with MTX? All I can say is that my daughter failed MTX by itself, so cyclosporin was added with it. That didn't work so we moved on to Cellcept with cyclosporin (first combo that worked - just couldn't continue taking it). We then moved on to the big guns, chlorambucil, again she couldn't continue taking it, it wasn't right for her. We had a choice of Remicade or ivig at that point, our insurance said yes to ivig right away, and we didn't need to look further from that point.
Ivig did the job, but it took almost 4 years of infusions, every 4 weeks for a 5 day period.....
Just remember that if your Dr. is unsure of what dose to do (its tricky with kids because they grow so darn fast), or what med to try next, Dr. Foster is always willing to collaborate if the Dr. asks. He communicates by email or phone.
Rebekah started with oral MTX, and then we moved on to injectable MTX 1ml once a week. Doc says that is the max (I never did ask why, but I assume it is weight related). They (eye doc and rheum) have mentioned that remicade would be the next step up the ladder. I have never even heard of some of the meds your daughter is on or has taken. I am just so troubled on what to do next. It is good to know Dr. Foster will work with other doctors even if he has never met the patient...
You mentioned that cellcept and cyclosporin worked, and that chlorambucil worked but that she could not continue taking them...why, side effects? Also, how are these drugs administered?
Edited by: Uveitis Mom at: 8/24/09 9:21 pm
Re: Symptoms of JIA
She couldn't stay healthy on them. Dr. Foster told me that she didn't respond like the majority of his patients. She kept getting pneumonia.
If you go to Remicade, I believe you still have to have a second med, like Methotrexate, or Cellcept so that you can reach remission. Remicade alone has caused problems in that area, I believe.
The meds that I mentioned are all in oral form. My daughter started with oral mtx as well, but once she reached 17 mg (still small dose) they put her on the injectable, then added a second med.
There are choices out there. There is no reason to sit on something if it doesn't work. Knowing that always gave me so much hope.
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