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jra getting worse w/recurrence

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jmsharvey2 View Drop Down
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  Quote jmsharvey2 Quote  Post ReplyReply Direct Link To This Post Topic: jra getting worse w/recurrence
    Posted: 17 November 2007 at 9:21pm

 I'm wondering if anyone's child has gotten worse with each recurrence of jra. My daughter was diagnosed at 22 months with pauciarticular jra one joint(knee) she took naproxen for 1 to 1.5 years then was in remission. At six she had another bout, this time naproxen didn't work so she was on clinoril. At 11 she had another bout so she was put on clinoril again but that didn't work then motrin(high doses) then plaqunil then methotrexate then enbrel. The doctor tried taking her off the methotrexate after she started the enbrel but she started swelling again so she is currently on both. But also during this time it spread from her knee to her foot, shoulder, elbow, and hand. She also had to have several cortizone shots which she never had with the other bouts.

I'm worried about what's going to happen the next time she has a recurrence.

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trueazuil7 View Drop Down
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  Quote trueazuil7 Quote  Post ReplyReply Direct Link To This Post Posted: 19 November 2007 at 12:35pm

HI

I am at work and some times posting is blocked but I when I posted a week ago about my daugter they were nice enough to tell me that more people read the Regular RA thread so to post there and also they sent me to another forum that was specificaly for Juvenile RA  here is the link.. I will make sure it is the right one when I get home  so check back if it is incorrect .. there is quite a bit of support and help on both sites

http://www.gossiping.net/phpBB2/index.php?mforum=kaytyray

good luck !

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Suzanne View Drop Down
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  Quote Suzanne Quote  Post ReplyReply Direct Link To This Post Posted: 20 November 2007 at 6:47pm

The busiest parents board I've found is at arthritis.org.  There is a Parents and Parenting board.  The adult board here is good, too, because some of the adults had jra and everybody is very nice, too.

My best advice is to take one day at a time, and enjoy the good times!  Every child's path is different, and it is all so unpredictable.

We have resisted starting the stronger meds while my daughter is not in pain, not fatigued, not missing school or activities, because of what you described - when one stops, it seems it takes more to control things.

I hope both your daughters will be feeling better soon! 

Suzanne - mom of daughter w/jra

"There is nothing worse than aggressive stupidity." ~ Goethe
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jmsharvey2 View Drop Down
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  Quote jmsharvey2 Quote  Post ReplyReply Direct Link To This Post Posted: 20 November 2007 at 8:45pm
Thank you both. She is doing very well now, I just worry about what it's going to be like next time. I have checked out the other boards you suggested, very helpful thank you.
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kenya View Drop Down
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  Quote kenya Quote  Post ReplyReply Direct Link To This Post Posted: 09 December 2007 at 9:47pm

I am new to the JRA section of the message boards. I have a 15 yr old who is now showing signs of JRA. I have had RA for 10 years and both of my children are ANA positve. She also has a + RF but has no joint swelling till now.

I don't know if it is the same with JRA as adult onset RA but the post above about the resistance to start the stronger meds made me think...

What kind if any of joint deterioration is being done without the disease modifing drugs? I ask that because in 10 years and a mod to severe classification I have no joint deterioration. I was started very early in my care. I don't know  if that the treatment is different but it might be something to ask... :)

Kenya

 

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Suzanne View Drop Down
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  Quote Suzanne Quote  Post ReplyReply Direct Link To This Post Posted: 10 December 2007 at 10:53am

Kenya - we have used xrays and MRIs to monitor for joint damage.  It takes longer to show up on xrays, but because our daughter has to be sedated for MRIs, we have to weigh that risk.

You also have to weigh the risk of the treatment vs. its potential benefits.  Right now, for us, immune suppression really only has one potential benefit - to possibly prevent future possible joint damage. There is no guarantee that it will.  What we do know that what happened to her on immune suppression before was not in her best interest.  Pneumonia.  Staph.  She missed school, she missed activities, she was a very sick little girl.  Both infections are potentially life threatening.  

Some children do great on immune suppression.  Ours didn't.  Until she needs more to function normally, we hope to avoid it until she is older.  Will it be too late?  We don't know, anymore than we know anything about how her disease will progress.  We still have a ped here or there who will say "sometimes it just goes away on its own".

We don't believe that.  But we do believe that you build up 'immunity' to the drugs out there now, so we want them to work when she needs them.     

 

Suzanne - mom of daughter w/jra

"There is nothing worse than aggressive stupidity." ~ Goethe
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lj1910 View Drop Down
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  Quote lj1910 Quote  Post ReplyReply Direct Link To This Post Posted: 28 December 2007 at 3:58pm

hey everyone! LJ here! I am 21 years old with Systemic Jra. I have a new blog called Living w/ Jra. would love it if you or others would check it out.

http://livingwjra.blogspot.com/

 

Thanks and good luck everyone!!

<3L.J<3
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KTakay View Drop Down
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  Quote KTakay Quote  Post ReplyReply Direct Link To This Post Posted: 02 January 2008 at 6:53pm

LJ, I had JRA when I was 8 and finally outgrew it at 40.  I think you can do it much sooner.  I remember thinking some of the same thoughts you were thinking and I had wished also to have others that I could talk to.  You do...there are so many avenues these days, especially with the internet.  You are very lucky.  Here are some tips...go online to the Arthritis Foundation and look at the Junior conferenece, I believe they might hold it in Florida.  I wish I had knowsn that when I was a kid and I probably would have gone.  I still may go someday, but maybe to try to help others.  Also, if you want to try to feel better, I may be able to help if you are willing. A person with Juvenile Arthritis has to see the benefit of not having the illness and want to actually be healed for it to happen.  If you are there, then let me know and I will definitely try to be your coach and help you.  I saw your blog, but am so out of touch with how these work, that I didn't know if "blogs" are just to read or if you can actually make comments to them.  I'm not "that" old, but it sure made me feel old.    You take care and you have so much life to live that you don't want to waste it...I had many of the same feelings, so I know how you feel, but I look back on it and think why did I do that... Life is too short.

Smile and start thinking you feel no pain...1st step...really...

Karen

Karen T
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ShaDucky View Drop Down
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  Quote ShaDucky Quote  Post ReplyReply Direct Link To This Post Posted: 12 March 2008 at 11:22am
Just go with it! I have been through remission and back to the disease. Sadly mine did come back as a much more severe form. But you live one day at a time.
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  Quote jnm1995 Quote  Post ReplyReply Direct Link To This Post Posted: 10 July 2010 at 1:17pm
I am fairly new to jra and new to this site. My daughter is 16 and in Feb was diagnosed with jra, apparently the aggressive one she is on mobic, methotrexate and folic acid. she is better now then she was a couple monthes ago. But I really don't know what to expect . She is in the marching band ,its her senior yr and she has been asked to be one of 2 section leaders. They are in the aggie band which went to NY for the Macys parade in '07 and they are going to the Pasedena for the Rose Bowl parade this yr(Lord wiling) . I do not know what to do as far as that because last yr in Oct is when she started with all this and by christmas she was really bad, it went from her foot to her knee.It is alot of money to go but an experience of a lifetime. She was able to march in Macys because she did not have this at that time. The band director is willing to have her play mallots if need be during marching season. I guess my question is if she is on all those meds is the likelihood of a flare up this winter inevitable or does she have a good chance of not having a problem? Also on another note.. She will be 17 this month, I tried to get her on disability and was denied,should I even bother cause it seems to me if she has the aggressive JRA they would be a little more apt to approve . or am I wrong? I just don't know anything about any of this . Never dealt with disability either
Praying mama
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