Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 Hi All: I am worried about internal organ involvement with systemic JRA. I wanted to know if anyone on this list, or who, has had organ involvement with JRA? How do they correct organ involvement? Is it only systemic that has this possibility or all JRA types? How do you know, without tests, if there is a problem with an organ or is it only identified with tests? Is it something that happens quickly, during onset of the illness? Thank you all. Stay warm. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Hi Missy. My son does not have systemic, but many other children here do, so I am sure one of those moms will chime in soon. It does sound like side effects from meds are a possibility. How old is your daughter and what meds is she on now? My son is on methotrexate now, and that can cause tiredness. Plus the disease alone can cause fatigue when it is active. It is not normal really to sleep that much, and the drs should be able to give you a better answer than clumsiness. Does your daughter see a ped rheumy? They are usually the best at dealing with kids and teens with arthritis. I hope you find some answers soon. Michele ( 17, pauci & spondy) Systemic JRA I'm new to this JRA group message chat and I wanted to ask a few questions about my daughter's JRA hoping someone else's child has it and can give me some insight to how they react to the meds. was diagnosed with Sytsemic JRA and has taken Prednisone, Sulfasalazine, Naproxen, Vioxx, Enalapril, Hydrochlorathyazide, Motrin, Methotrexate, and Remicade. Several others but they were for only a short time. I was wondering about side effects of these meds. She's had nearly every one possible. I know all of the text-book effects that come with the RXs but she is STILL always soooo tired and has trouble moving around (getting up and being dizzy). The doctors say they don't think these are side effects and that she is just clumsy and should get more sleep. Really, she sleeps about 15 hours a day. I guess I just want to talk with anyone who has similar circumstances. I like the idea of this online support group. Thanks so much!!! Missy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 -Hi Missy, Welcome to the group. Im sorry your daughter is having such a tough time getting her disease under control with the meds. It sure sounds like shes been on a lot of them. I havent even heard of some of the drugs that shes been on. I hope that you are able to find the right combination soon. Have you tried Kineret yet. My so is not on it, but im hearing some wonderful things about this drug and how its helping a lot of systemic kids. I think the tireness and fatigue is a huge issue for these kids until the right drugs are found. My son, , is 7 and is systemic, he had a aweful time last year with faigue and while it is still there somewhat, hes doing much better since we added enbrel to his cocktail of drugs. hes now taking prednisone, MTX, enbrel, folic acid and indomethacin and is doing great. Im betting once you find the right drug I think a lot of the fatigue will go away. How old is ???? how is this affecting her school life?? Again, its good to " meet " you even if its not under good circumstances. This list was a lifesaver for me in the beginning and still is. Hugs Helen and (7,systemic) -- In , " katieandemilysmom " <katieandemilysmom@y...> wrote: > > > I'm new to this JRA group message chat and I wanted to ask a few > questions about my daughter's JRA hoping someone else's child has it > and can give me some insight to how they react to the meds. > > was diagnosed with Sytsemic JRA and has taken Prednisone, > Sulfasalazine, Naproxen, Vioxx, Enalapril, Hydrochlorathyazide, Motrin, > Methotrexate, and Remicade. Several others but they were for only a > short time. I was wondering about side effects of these meds. She's had > nearly every one possible. I know all of the text-book effects that > come with the RXs but she is STILL always soooo tired and has trouble > moving around (getting up and being dizzy). The doctors say they don't > think these are side effects and that she is just clumsy and should get > more sleep. Really, she sleeps about 15 hours a day. > > I guess I just want to talk with anyone who has similar circumstances. > I like the idea of this online support group. > Thanks so much!!! > Missy Quote Link to comment Share on other sites More sharing options...
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