I am wondering if there is anyone out here who can tell me there story with this form of the illness.... The dr's are great at letting me know text book information about her illness.... However they lack the abulity to tell me more about long term effects and issues. For instance; I had no idea that it would be a possibulity that I would be giving my baby shots weekly... Yet here we are doing it... I hate it when she asks me "why mommy give me shot" omg... It kills me!!!!
I was hoping that someone out there might be willing to share there experance with systemic jra..... Maybe tell me what you had to go thru... Or thing I might expect to have to deal with.
I might add that she was diagnosed last march at age 2... She has been severely effected by this.... Has had the inflamation around her heart (they drained over 4oz that was compressing her heart they said another few house she would not be here now)... She gets naproxen, and prednizone (sp?) daily and methatrexate (sp?) shots weekly. She had a long recovery from the first flare up. This included learning to re sit up, turn over, walk, run, climb stairs ect... She is in special education pre school and they are helping her delays in speach and social emotional and behavorial issues.
Seems your daughter was really affected by this. Our daughter kaelyn was diagnosed with it @ age 2. She has been on methotrexate shots since feb. 2004, and has to start getting another one, enbrel in the next week. I can't tell you long term effects. I know her ped. Rheumy said hers was still reversible & we should do all we can now. She has systemic jra also.
Her Dr. Took her off the prednisone; said there was too many side effects.
after being sent home several times from the ER and twice from the pediatrician saying it was the flu when our son had a fever of 105 for a week and couldnt walk and had a rash over his body , we brought him to a childrens hospital an hour away from home and found that he had JRA ...his liver was enlarged kidneys not functioning well, heart enlarged and constant vomiting , they first said they couldnt rule out luekemia and couldnt treat him until then. They waited 2 days and then put him on high dose steroids. we were in the hospital for 2 weeks. I was 8 months pregnant with our third and completely beside myself. He is now on methotrexate injections, enbrel injections and daily steroids and his sed rate is still climbing. it was 120 at the hospital and fell to 52 recently, now it is back at 77 and we are very frustrated as to what to do for him because all these drugs have such potential for negative side effects! We are trying fish oil and cutting out dairy and red meats which is supposed to help with the inflamation. Will let you know what happens