Guest guest Posted March 9, 2008 Report Share Posted March 9, 2008 Hi- I'm just checking in to see how your appt. went.... and what the news is for you all. If there's anyplace that will manage to have the MRA trial, I bet it's Cinci.... Please update us on Jae when you have a chance. Best hopes to you- Colleen (mom to Caitlin, 9, systemic) kelliebiaglow <kelliebiaglow@...> wrote: Hello again. I am so glad I joined this group! Thanks to all for your support. I wanted to answer Collen's question. We go to cincinnati childrens for rheum clinic. We love our rheumy. He is under the impression that a study with MRA will be starting soon. We go back tomorrow, so I will ask again. As for rilonacept and insurance. Been there, done that. Kineret, as you know, is not approved for the use in kids under the age of 18, so our insurance denied us. We did appeal, but still got denied (and its very expensive) So unfair! I'm sure when rilonacept comes available, the same thing will happen again, if our rheum. decides to put her on it. I have heard promising news about both drugs. Re: Jae's flares. They last about 3 hours every am. Low grade temp, irritability, swollen joints, decreased appetite, refusal to walk/play ect. No rash. She never gets a rash unless we decrease steroid. I guess the meds kick in after a couple of hours and then she is better. Still with swollen joints, but no fever, and she will walk and play, and mood is better. Thanks again to everyone. Jae's mom --------------------------------- Be a better friend, newshound, and know-it-all with Mobile. Try it now. 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.