Guest guest Posted March 26, 2004 Report Share Posted March 26, 2004 Fifteen almost sixteen sounds just about right to me. That was the age when my JRA progressed. I first learned that I had it at age 6, but it was basically treated with naprosyn and was fine. Then at 14 I had a major flare and have been battling flare after flare since then. I also have spondyloarthropathy..not fun. I personally enjoy Enbrel.. The shots aren't to bad, it is a little weird giving the shot at first.. I mean who really likes inflicting pain on themselves? But its a way to take the upper hand on the JRA.. I can totally understand where she is coming from on the pred.. I had little pred cheeks (not to bad luckily) during my senior prom.. I was devestated.. But I guess that just goes with the age. I might suggest switching from MTX to Enbrel if she is feeling worse. I tried tons of medications (naprosyn, sulindac, vioxx, celebrex, sulfasalasine, methotrexate, prednisone, plaquenil.. I can't remember the rest) before we found any that even helped.. I'm still not in remission though. For me the MTX didn't work.. It didn't control the JRA.. made me nauseous, my hair thinned.. and worst of all I got acne. Since stopping it.. no acne.. Luckily the cool thing about her being 15 almost 16 is she is old enough to be able to take control of this disease and make it hers.. Like being allowed to decide what treatments she want's to do and which one she doesn't.. And she can tell you how the disease is really impacting her. When your really little you don't have the ability to do that. And because of that her treatment will be better because she can say whether or not its working.. If she feels like its not maybe its time to move onto the next treatment. At 16 this disease sucks to deal with.. it sucks at 16 and younger.. and it continues to suck at 17, 18, and even at 19 it still sucks. But like Rusty says JRA is only a bump on the road of life.. You have found an awesome support group.. with lots of great information and support. Take care Lots of Love (Polyarticular Juvenile Rheumatoid Arthritis and Spondyloarthropathy, 19) www.caringbridge.org/ca/lisaspage Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2004 Report Share Posted March 26, 2004 Hi, my daughter was diagnosed this last fall with polyarticular JRA. I have to wonder because she was 15 almost 16 years old. It is now in her fingers and neck. There has been pain in a few other places also. She has always played most sports all her life. That is why they think it took this long to really show up this late. For several years she was always diagnosed with pulled neck muscles from her sports. It was not until her fingers doubled in size that they did testing. She still plays on the varsity high school basketball team. She is taking Methotrexate, Vioxx,Prednisone and folic acid. All the meds have really slowed her down. She thinks the medications make her feel worse than the disease. Plus, all the meds do not seem to be working. She is being seen at Riley's Hospital in Indianapolis. Her doctor is considering adding Enbrel. I am not sure we should not possibly go somewhere else. I also would like to know if anyone's child is a teen with it. This is a horrible age to be diagnosed at. She is so self conscience of her hands, and the steroids making her gain weight. Everytime we try to back off the steroids, her fingers get out of control. They have talked of injecting her fingers, but the doctor is not sure this will help because the joints are pencil thin at the top and from the middle down very enlarged. She just tries to hide her hands all the time. On the up side, she did win the MVP Offensive award in basketball this year. She will be devastated if this was her last year to play. She already had to drop out of Volleyball and Softball. Thanks for your help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2004 Report Share Posted March 26, 2004 Hi.Welcome to this very informative and supportive list. You will find much info here and lots of shoulders to lean on when you need it.My son is a teen with pauci jra and spondyloarthropy.The latter disease affects the spine and tendons in the body. It is a very hard age to be diagnosed and live with this disease. My son was a great baseball and volleyball player. He continued to play for a while after diagnosis, but he has unfortunately quit. Not so much he cannot do it, but more that he has lost confidence in his ability. He is feeling much better now and can do a lot more now that he has been on MTX (methotrexate) for two years, but we cannot get him to try sports again. Once the meds have time to work, your daughter should stabilize. Sometimes it takes time to find the right mix of meds. Hopefully you will be able to get rid of the prednisone soon. Right now my son takes the MTX, folic acid and is down to taking Celebrex only when needed. He used to take 800 mgs when we started the MTX. It sounds like your drs are being aggressive early in the course of the disease and that is a good thing. My son was diagnosed in Oct 2000 at the age of 13. He is now 16. He is doing much better now than when first diagnosed. I would recommend that your daughter read as much info as possible on the disease and work at controlling it. It sounds like you are on the right path. There are other parents with teens on the board, I am sure they will chime in soon. Again, welcome and ask any questions you may have. Someone here will be able to help, I am sure. Michele (16, pauci & spondy) Daughter with JRA Hi, my daughter was diagnosed this last fall with polyarticular JRA. I have to wonder because she was 15 almost 16 years old. It is now in her fingers and neck. There has been pain in a few other places also. She has always played most sports all her life. That is why they think it took this long to really show up this late. For several years she was always diagnosed with pulled neck muscles from her sports. It was not until her fingers doubled in size that they did testing. She still plays on the varsity high school basketball team. She is taking Methotrexate, Vioxx,Prednisone and folic acid. All the meds have really slowed her down. She thinks the medications make her feel worse than the disease. Plus, all the meds do not seem to be working. She is being seen at Riley's Hospital in Indianapolis. Her doctor is considering adding Enbrel. I am not sure we should not possibly go somewhere else. I also would like to know if anyone's child is a teen with it. This is a horrible age to be diagnosed at. She is so self conscience of her hands, and the steroids making her gain weight. Everytime we try to back off the steroids, her fingers get out of control. They have talked of injecting her fingers, but the doctor is not sure this will help because the joints are pencil thin at the top and from the middle down very enlarged. She just tries to hide her hands all the time. On the up side, she did win the MVP Offensive award in basketball this year. She will be devastated if this was her last year to play. She already had to drop out of Volleyball and Softball. Thanks for your help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2004 Report Share Posted March 26, 2004 Welcome, My son also suffers from the " I'm ok " syndrome. He is 10 and doesn't want anything to single him out. I did have to break down and tell his teachers and his baseball coach after he went on Mtx. due to the fatigue and stomach upset. Everyone has been very understanding. This is a wonderful group, so I hope you feel welcomed here and are able to vent and share with us all. Missy and Tyler (spondy 10) Re: Daughter with JRA > -HI.. > > and welcome to the group.. I hope you feel as " at home " here as I do. > > My son is only 6 and systemic, but I know what its like having > teenagers and I feel for having something else now to deal > with. its just not fair at any age really. > > I think it pretty typical that the kids of any age dont always > like > mom checking out their joints and they hide things. All part of > the " im ok syndrome " My Nick had a fit when we talked about > telling > his class what was wrong with him ( accomadations in school so the > kids were begining to ask questions) Nick didnt want anyone to > know. > We are still working with him to let the teachers know when he is > hurting. He always pretends all is ok and his teacher is having to > read his body language, Fatigue has been a big issue with . > > Since did the local JAM walk a month ago, he now realises > hes not alone in this. He saw other children all with JRA and is > much > more comfortable with his condition. he wears his t-shirt he got > with > pride to school nearly every week. I think getting your daughter > involved and talking with others her age will help her. > > I hope they find the right cocktails of meds for her and she can > continue with her sports. ITs always so tough in the beginning, > but > does get easier )) > > hugs Helen, mom to (6,systemic) > > -- In , " cja417 " <CjA417@a...> wrote: > > Hi, my daughter was diagnosed this last fall with polyarticular > JRA. > > I have to wonder because she was 15 almost 16 years old. It is > now > in > > her fingers and neck. There has been pain in a few other places > also. > > She has always played most sports all her life. That is why they > > think it took this long to really show up this late. For several > > years she was always diagnosed with pulled neck muscles from her > > sports. It was not until her fingers doubled in size that they > did > > testing. She still plays on the varsity high school basketball > team. > > She is taking Methotrexate, Vioxx,Prednisone and folic acid. All > the > > meds have really slowed her down. She thinks the medications > make > her > > feel worse than the disease. Plus, all the meds do not seem to > be > > working. She is being seen at Riley's Hospital in Indianapolis. > Her > > doctor is considering adding Enbrel. I am not sure we should not > > possibly go somewhere else. I also would like to know if > anyone's > > child is a teen with it. This is a horrible age to be diagnosed > at. > > She is so self conscience of her hands, and the steroids making > her > > gain weight. Everytime we try to back off the steroids, her > fingers > > get out of control. They have talked of injecting her fingers, > but > > the doctor is not sure this will help because the joints are > pencil > > thin at the top and from the middle down very enlarged. She just > > tries to hide her hands all the time. On the up side, she did > win > the > > MVP Offensive award in basketball this year. She will be > devastated > > if this was her last year to play. She already had to drop out > of > > Volleyball and Softball. Thanks for your help. > > > > Quote Link to comment Share on other sites More sharing options...
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