Guest guest Posted February 23, 2004 Report Share Posted February 23, 2004 Wow , I didn't realize Ezra was on Thalidomide. Now I'm playing reporter. . . when, where and why? I had no idea that Thalidomide was being used with jra, or is it for another reason? Abbie generally does pretty well since starting Remicaide almost 2 years ago. However, it is just a matter of time, as with most systemic kids and the biologics, the clock is ticking. She does not respond as well as in the beginning, and the other meds have increased as well. About the only really good thing is that she is still off Prednisone. The urologist today said that it appeared from her ct scan that she has passed a kidney stone, and that she has a spot on one of her kidneys indicative of stone formation. She also has a cyst on her left kidney. We go back in 2 weeks for another ct scan, this one with contrasting dye. She has felt better since her last attack Thursday night. Still very painful to the touch, but no severe pain. Christy (Abbie, 14 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2004 Report Share Posted February 23, 2004 Hi Christy, Thank you for sending in the recent update, to let us know how everything's been going. I do hope that Abbie's kidney problems will resolve and that she won't have too much more pain from it. You guys will be in our thoughts and I hope the next ct scan procedure goes well. I was happy to read that Abbie has still been able to avoid a return to using the steroids. She's been through so much, since this all began. We know how it can get discouraging at times but I hope she's able to keep her spirits up. We're rooting for her! Aloha, Georgina PS ... I'll post a brief excerpt about thalidomide therapy in separate post after this one. gazelle34@... wrote: > Wow , > > I didn't realize Ezra was on Thalidomide. Now I'm playing reporter. . . > when, where and why? I had no idea that Thalidomide was being used with > jra, or is it for another reason? > > Abbie generally does pretty well since starting Remicaide almost 2 years > ago. However, it is just a matter of time, as with most systemic kids > and the biologics, the clock is ticking. She does not respond as well as > in the beginning, and the other meds have increased as well. About the > only really good thing is that she is still off Prednisone. > > The urologist today said that it appeared from her ct scan that she has > passed a kidney stone, and that she has a spot on one of her kidneys > indicative of stone formation. She also has a cyst on her left kidney. > We go back in 2 weeks for another ct scan, this one with contrasting > dye. She has felt better since her last attack Thursday night. Still > very painful to the touch, but no severe pain. > > Christy (Abbie, 14 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Thanks e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 Hi Christy, Sorry for taking so long to answer. Life can get hectic:) Hope Abbie is feeling better. What a time you have had! Yes. Ezra is on thalidomide for the systemic jra. In fact, the study that Georgina was so kind to repost was a study of thirteen kids with systemic jra who have been on thalidomide and showed improvement. Ezra was one of those kids. It has allowed him to be off of steroids for the past year. I agree with you though, it’s hard to know what’s going to happen with these biologics. We just increased Ezra’s dose of remicade in the hopes of seeing further improvement. We’ll see. Take care. (and Ezra, seven year old systemic) On 2/23/04 7:31 PM, " gazelle34@... " <gazelle34@...> wrote: Wow , I didn't realize Ezra was on Thalidomide. Now I'm playing reporter. . . when, where and why? I had no idea that Thalidomide was being used with jra, or is it for another reason? Abbie generally does pretty well since starting Remicaide almost 2 years ago. However, it is just a matter of time, as with most systemic kids and the biologics, the clock is ticking. She does not respond as well as in the beginning, and the other meds have increased as well. About the only really good thing is that she is still off Prednisone. The urologist today said that it appeared from her ct scan that she has passed a kidney stone, and that she has a spot on one of her kidneys indicative of stone formation. She also has a cyst on her left kidney. We go back in 2 weeks for another ct scan, this one with contrasting dye. She has felt better since her last attack Thursday night. Still very painful to the touch, but no severe pain. Christy (Abbie, 14 systemic) Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.