Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Hello jra group, I had to share the good new about our son (age 4). Some of you might know his story. At a year of age he was diagnosed with systemic JRA and had quite severe symptoms. His ESR was as high as 115 and his hgb as low as 6 with PLTS over 1 million. He was put on MTX and started on high dose pulse IV steroids. He has had been in somewhat of a constant flare for the last three years and on many courses of steroids. He has had a daily rash since he was diagnosed. He failed Enbrel in Dec/ Jan. and his ESR was back up to 66. We started Kineret in Jan. and after the first dose his rash disappeared (literally), the swelling in his joints is gone...His ESR was 14 after a month of therapy (as was all of his lab work). Today he was seen back at Texas ish Rite in Dallas. The cheif rheumatologist there was very excited about his wonderful response to the drug. Oddly enough, the drug has been developed for adults suffering from arthritis....but has not proven to be effective....However, all of the children with systemic disease at TSRH have responded to the drug!!!! They are about to publish an article with their results in hopes of having the drug FDA approved for systemic JRA. Thought you'd all like to hear the good news. If any of you have questions about our experience with the drug....please e-mail me directly at mwestfal@... don't always check the jra list. Sincerely, Marguerite and (4) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 I learned this weekend that they believe that systemic kids unlike poly kids have a problem with the interleukin.. Kinteret is an interleukin med which is why it works better for systemic kids.. Poly kids have the whole TNF problem.. hence the reason Enbrel works so well.. Or at least thats what they were saying this weekend at JA day Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Marguerite:How wonderful of you to write and tell us of ' positive experience. May he continue to do extremely well and thank you so much for sharing this with us. and Rob 14 Spondy On Mon, 05 Apr 2004 18:56:10 -0000 "margueritewestfall" <mwestfal@...> writes: Hello jra group,I had to share the good new about our son (age 4). Some of you might know his story. At a year of age he was diagnosed with systemic JRA and had quite severe symptoms. His ESR was as high as 115 and his hgb as low as 6 with PLTS over 1 million. He was put on MTX and started on high dose pulse IV steroids. He has had been in somewhat of a constant flare for the last three years and on many courses of steroids. He has had a daily rash since he was diagnosed. He failed Enbrel in Dec/ Jan. and his ESR was back up to 66. We started Kineret in Jan. and after the first dose his rash disappeared (literally), the swelling in his joints is gone...His ESR was 14 after a month of therapy (as was all of his lab work). Today he was seen back at Texas ish Rite in Dallas. The cheif rheumatologist there was very excited about his wonderful response to the drug. Oddly enough, the drug has been developed for adults suffering from arthritis....but has not proven to be effective....However, all of the children with systemic disease at TSRH have responded to the drug!!!! They are about to publish an article with their results in hopes of having the drug FDA approved for systemic JRA. Thought you'd all like to hear the good news. If any of you have questions about our experience with the drug....please e-mail me directly at mwestfal@... don't always check the jra list. Sincerely, Marguerite and (4) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Marguerite. That is such wonderful news. I hope that continues to see good results witht eh Kineret! Alia and Caroline, age 2, pauci and uveitis > Hello jra group, > I had to share the good new about our son (age 4). Some of you > might know his story. At a year of age he was diagnosed with > systemic JRA and had quite severe symptoms. His ESR was as high as > 115 and his hgb as low as 6 with PLTS over 1 million. He was put on > MTX and started on high dose pulse IV steroids. He has had been in > somewhat of a constant flare for the last three years and on many > courses of steroids. He has had a daily rash since he was > diagnosed. He failed Enbrel in Dec/ Jan. and his ESR was back up to > 66. We started Kineret in Jan. and after the first dose his rash > disappeared (literally), the swelling in his joints is gone...His ESR > was 14 after a month of therapy (as was all of his lab work). Today > he was seen back at Texas ish Rite in Dallas. The cheif > rheumatologist there was very excited about his wonderful response to > the drug. Oddly enough, the drug has been developed for adults > suffering from arthritis....but has not proven to be > effective....However, all of the children with systemic disease at > TSRH have responded to the drug!!!! They are about to publish an > article with their results in hopes of having the drug FDA approved > for systemic JRA. Thought you'd all like to hear the good news. If > any of you have questions about our experience with the > drug....please e-mail me directly at mwestfal@k... don't > always check the jra list. Sincerely, Marguerite and (4) Quote Link to comment Share on other sites More sharing options...
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