Rejected again for Enbrel

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Breana's mom

Posted Thursday, October 16, 2003 5:18 PM

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Last Login: Thursday, July 31, 2008 12:31 PM
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GRRRR Tufts has again rejected the Enbrel for Breana. The basis is that it is only FDA rec. for 4+ years of age. And also only for Rhem Arthritis. GRR this is so frustrating, BReana's doc's in Boston are now going straight to the manufactor of Enbrel to attempt to get them to 'sponsor' her. In turn of course they would have assess to her records pertating to treatment results. I will do whatever it takes to get her off this damn Prednisone. The doc's agree she is having to sevre side affects and needs ot ocme off of it but it is to dangerous without another med otpion! Has anyone whose child is on Enbrel had the same difficulties? Tracy

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Andrew'sMom

Posted Wednesday, November 05, 2003 11:03 AM

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Last Login: Thursday, July 31, 2008 12:33 PM
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Breana's mom, My son Andrew has been on Enbrel for approx. 6 months. We too go to Boston for our Dr's. It took us about 3-4 weeks to hear back from our application to see if we were approved. Andrew does have Rhem Arthritis for the last 2.5 yrs. He was diagnosed just before his 1st b-day. I totally understand why you would want Breana off the prednisone. If you go to Childrens in Boston your in good hands. They are the best. Make sure they take her off the pred. slowly!!!!! Good luck if you want to talk let me know. Andrew's Mom

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LisaMarquis

Posted Wednesday, November 05, 2003 11:58 AM

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Last Login: Thursday, July 31, 2008 12:31 PM
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My 3yr old daughter is on Enbrel. She has been on a small dose of prednisone while on the Enbrel. We do the Enbrel injections (1cc 2x per week) at home. Her Rheumatologist did not hesitate to put her on it. Rheumatology Associates in Portland Maine is where her Dr is located.

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Breana's mom

Posted Wednesday, November 05, 2003 5:14 PM

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Last Login: Thursday, July 31, 2008 12:31 PM
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Can I ask what you have for insurence? Did you have to go through an appeal process to get it? The whole reason for the denial at this point is she is not 4 years old and it is only FDA approved for 4 and over. Any input is appriciated!

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LisaMarquis

Posted Thursday, November 06, 2003 8:17 AM

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Last Login: Thursday, July 31, 2008 12:31 PM
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We are covered by Anthem Blue Cross Blue Shield for medical and Advance PCS for prescriptions. We did not have to go through an appeal process but did have to get prior authorization before the pharmacy would fill the script due to the retail cost of the drug. May I ask how old your little one is? I hope that she/he is doing well. Please feel free to email me cmarqui2@maine.rr.com Take care, Lisa - mom to Arianna and Griffin

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soniadykhuizen

Posted Thursday, November 06, 2003 4:31 PM

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Last Login: Thursday, July 31, 2008 12:32 PM
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Hi Everyone, As many of you know my 8 year old daughter has stills disease and just started prednisone along with the naproxyn (625 mg daily). I know I need to be patient but it seems like were just going right back into a major flare. She has had to come home from school the past 3 days. The dizziness, headaches and nausea are terrible and now her left knee is swollen and she can only limp. She has laid in bed every night this week. No fevers or rash yet. This disease is a roller coster of emotions. I guess she was doing just doing so well for the past few weeks and then you start to think that everything will just get back to normal...How do you guys live with the constant flares and remissions. Its like going thru the heartache all over again. We broke out the walkie talkies again which is what she uses to communicate with me. We live in a 3 story house and the stairs are to much for her. O.K. well thanks for letting me vent. I guess I need a funny hubby laundry soap story. :-) Drea is crying, time to go. God Bless, Sonia

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CynthiaJ

Posted Thursday, November 06, 2003 7:01 PM

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Last Login: Thursday, July 31, 2008 12:32 PM
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Sonia and everyone- Hope Aundrea is feeling better, she is a strong little girl. I know this disease is so frustrating. I think we as parents have "emotional flares" while our children are having "physical flares". We can not stand to see our children in pain and there is nothing we can do but give them medicine. At least you all can, all I have to work with is Tylenol- Motrin and Nsaids are out of the question. We can hold them and comfort them, but doubt ourselves at the same time. I think I do that every day. When a flare ends we are estatic and then depressed when they start again so quickly. We imagine what they are going through and we cry. THERE IS HOPE. We all have keep that in mind. We are all doing the very best that we can and getting our children the best medical care available. WE comfort to the best of our abilities and our children know that. WE have to be as strong as they are or they will lose hope. Keep your chins up. Tommorrow may not be so bad and if it is, then you will get through it. Find comfort and peace in the postings on this site. Vent when you need to; someone is listening and will respond. Some very special people on this board got me through a tough two weeks; you know who your are. I am forever grateful. This is really just a pick me up message for everyone. I myself am getting nervous about my daughters injection coming up but I will re-read what I have wrote here and I will get through it too. Take care- God Bless Cindy

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