Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Hi gang, Vanderbilt went duh on the Enbrel hives possability.Thank goodness for being enrolled in the safety study of Enbrel at Cincinnati Childrens.Dr.Lovell called a Dr.Allan Solinger at Amgen and we get to restart Enbrel in a few days. We have been advised to UPS cold storage his last two vials of his kit to be analyzed out in California.If there is a contamination a recall for certain lot nimbers are in order. We are to administer 25mg Benadryl 3 times a day and an extra dose 30 minuites to 1hr before Enbrel.From what they have seen hives usualy last around a month then stop on there own. Our biggest problem now is getting a new kit of Enbrel or atleast 1 vial or one week supply at $200. is approved for 5 vials a week but a kit comes with 4 vials not for individual sale.Lots of calls to make. We are to continue the Benadryl,hives or not for at least 1 month and see if things resolve. s daddy went from crying due to fear of the past to finding help if we have to spend over $700 just to get a new kit.Insurance company has been great so far and would mostl likely reimburse us after medical records where submited.All takes time to figure out.The worst of all worsts means he spends 2 weeks off Enbrel. Love and hugs Becki and 5 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Hi Becki, Oh, Becki. I wish there was something more that I could say or do but maybe right now just knowing at least that you guys are in our thoughts is some small comfort. It was good to hear that they've seen the hives start and then subside on their own, without needing to completely discontinue the Enbrel ... but a month is a really long time for a little guy to have to wait! I hope the Benadryl works. Will that make really sleepy, though? Good luck, Becki, in getting ahold of the next batch without too much trouble. I hope does well, between now and then. Aloha, Georgina Arthurnator@... wrote: > Hi gang, > Vanderbilt went duh on the Enbrel hives possability.Thank goodness for > being enrolled in the safety study of Enbrel at Cincinnati > Childrens.Dr.Lovell called a Dr.Allan Solinger at Amgen and we get to > restart Enbrel in a few days. > We have been advised to UPS cold storage his last two vials of his kit > to be analyzed out in California.If there is a contamination a recall > for certain lot nimbers are in order. > We are to administer 25mg Benadryl 3 times a day and an extra dose 30 > minuites to 1hr before Enbrel.From what they have seen hives usualy last > around a month then stop on there own. > Our biggest problem now is getting a new kit of Enbrel or atleast 1 vial > or one week supply at $200. is approved for 5 vials a week but a > kit comes with 4 vials not for individual sale.Lots of calls to make. > We are to continue the Benadryl,hives or not for at least 1 month and > see if things resolve. > s daddy went from crying due to fear of the past to finding help if > we have to spend over $700 just to get a new kit.Insurance company has > been great so far and would mostl likely reimburse us after medical > records where submited.All takes time to figure out.The worst of all > worsts means he spends 2 weeks off Enbrel. > Love and hugs > Becki and 5 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Becki:That is a lot of Benadryl for a kid......don't be surprised if is VERY sleepy while taking it! On the other hand, some meds have the opposite effect on some kids and it may rile him up and make him hyper!I am so glad he can restart the Enbrel. Rob and I have been praying and will continue to pray. Hope all goes well with the insurer....keep us posted. Love, and Rob 14 Spondy On Tue, 17 Feb 2004 23:10:30 EST Arthurnator@... writes: Hi gang, Vanderbilt went duh on the Enbrel hives possability.Thank goodness for being enrolled in the safety study of Enbrel at Cincinnati Childrens.Dr.Lovell called a Dr.Allan Solinger at Amgen and we get to restart Enbrel in a few days. We have been advised to UPS cold storage his last two vials of his kit to be analyzed out in California.If there is a contamination a recall for certain lot nimbers are in order. We are to administer 25mg Benadryl 3 times a day and an extra dose 30 minuites to 1hr before Enbrel.From what they have seen hives usualy last around a month then stop on there own. Our biggest problem now is getting a new kit of Enbrel or atleast 1 vial or one week supply at $200. is approved for 5 vials a week but a kit comes with 4 vials not for individual sale.Lots of calls to make. We are to continue the Benadryl,hives or not for at least 1 month and see if things resolve. s daddy went from crying due to fear of the past to finding help if we have to spend over $700 just to get a new kit.Insurance company has been great so far and would mostl likely reimburse us after medical records where submited.All takes time to figure out.The worst of all worsts means he spends 2 weeks off Enbrel. Love and hugs Becki and 5 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 In a message dated 2/17/04 11:12:38 PM Eastern Standard Time, Arthurnator@... writes: << and we get to restart Enbrel in a few days. We have been advised to UPS cold storage his last two vials of his kit to be analyzed out in California.If there is a contamination a recall for certain lot nimbers are in order. >> HI Becki: Glad to hear you can restart the Enbrel. It will be interesting to hear the results on the two vials you are sending back. Good luck securing the new kit:) I certainly hope they can do something for you guys. I know $700 wouldn't be falling off any of our trees, winter or not! Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Hi Georgina, Your sweet. doesn't have to wait a month to restart Enbrel,he can restart this Friday.I have now been told to use the one vial and ship the other to Amgen.That way we won't have to fret over insurance.Whew what a week! Love and Hugs Becki and 5 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Hi , With the initial onset of hives was getting 25mg Benadryl 4 times a day.Sometimes he would get groggy and other times all wired up but after a couple days he seemed to adjust to it. The drug rep was very nice and said the Enbrel is already refillable.I don't know how she came up with it but wasn't about to argue with her.Our pharmacy has some in the fridge so I can pick it up tomorrow. Love and Hugs Becki and 5 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Becki, I hope you get some answers as to the cause soon.... IM glad that can go back on the enbrel, good luck getting it worked out with insurance. Hugs Helen, mom to (6,systemic) Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6) DD (4)>From: Arthurnator@... >Reply- > , Rustyroom >Subject: /Enbrel >Date: Tue, 17 Feb 2004 23:10:30 EST > >Hi gang, >Vanderbilt went duh on the Enbrel hives possability.Thank goodness for >being enrolled in the safety study of Enbrel at Cincinnati Childrens.Dr.Lovell >called a Dr.Allan Solinger at Amgen and we get to restart Enbrel in a few >days. >We have been advised to UPS cold storage his last two vials of his kit to be >analyzed out in California.If there is a contamination a recall for certain >lot nimbers are in order. >We are to administer 25mg Benadryl 3 times a day and an extra dose 30 >minuites to 1hr before Enbrel.From what they have seen hives usualy last around a >month then stop on there own. >Our biggest problem now is getting a new kit of Enbrel or atleast 1 vial or >one week supply at $200. is approved for 5 vials a week but a kit comes >with 4 vials not for individual sale.Lots of calls to make. >We are to continue the Benadryl,hives or not for at least 1 month and see if >things resolve. >s daddy went from crying due to fear of the past to finding help if we >have to spend over $700 just to get a new kit.Insurance company has been great >so far and would mostl likely reimburse us after medical records where >submited.All takes time to figure out.The worst of all worsts means he spends 2 weeks >off Enbrel. >Love and hugs >Becki and 5 systemic Say “good-bye” to spam, viruses and pop-ups with MSN Premium -- free trial offer! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Becki:Whew, what a relief. I'll be praying for no more hives....or injections reactions....or anything.... Do you think, though, that you might want to get an Epipen just in case??? and Rob 14 Spondy On Wed, 18 Feb 2004 18:05:25 EST Arthurnator@... writes: Hi , With the initial onset of hives was getting 25mg Benadryl 4 times a day.Sometimes he would get groggy and other times all wired up but after a couple days he seemed to adjust to it. The drug rep was very nice and said the Enbrel is already refillable.I don't know how she came up with it but wasn't about to argue with her.Our pharmacy has some in the fridge so I can pick it up tomorrow. Love and Hugs Becki and 5 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Hi Becki, So happy to hear that all worked out well, as far as getting the medicine needed. Yea!!! Aloha, Georgina Arthurnator@... wrote: > Hi , > With the initial onset of hives was getting 25mg Benadryl 4 times > a day.Sometimes he would get groggy and other times all wired up but > after a couple days he seemed to adjust to it. > The drug rep was very nice and said the Enbrel is already refillable.I > don't know how she came up with it but wasn't about to argue with > her.Our pharmacy has some in the fridge so I can pick it up tomorrow. > Love and Hugs > Becki and 5 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Hi , I need to fax s pediatrician and rheumy about what is going on.They both don't know how things turned out.I will question the ped about an epi pen and the possability of going on once a day Loratadine or Zyrtec and Benadryl before an injection.Banadryl might be the drug of choice though.I read that studies have been done that prove children do not perform as well at school due to the groggy effect. Our local paper is sponsering our arthritis walk and they want to do an article about .They have already done one with Garett(10 systemic) and they want to do one on Ashly(4systemic).They also want to be at the team captain luncheon and say a few words.That should be interesting because the last time he talked about arthritis it was chewing out the school pt because he doesn't have arthritis anymore, so he didn't need an arthritis teacher. Love and Hugs Becki and 5 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Becki:Yes, the epi-pen would be a great idea. If someone has an anaphylactic reaction it is the drug they use in the hospital, and it would be right at your fingertips. It is easy to use, too, very user friendly, even in a panic. Not to scare you though. It would be your security blanket! That is awesome about speaking. I guess you'll have to rehearse! Every time I think about chewing out the PT I have to chuckle. Speaking of "I'm ok syndrome!!"Love, On Thu, 19 Feb 2004 08:45:05 EST Arthurnator@... writes: Hi , I need to fax s pediatrician and rheumy about what is going on.They both don't know how things turned out.I will question the ped about an epi pen and the possability of going on once a day Loratadine or Zyrtec and Benadryl before an injection.Banadryl might be the drug of choice though.I read that studies have been done that prove children do not perform as well at school due to the groggy effect. Our local paper is sponsering our arthritis walk and they want to do an article about .They have already done one with Garett(10 systemic) and they want to do one on Ashly(4systemic).They also want to be at the team captain luncheon and say a few words.That should be interesting because the last time he talked about arthritis it was chewing out the school pt because he doesn't have arthritis anymore, so he didn't need an arthritis teacher. Love and Hugs Becki and 5 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Hi , Thank the good lord and all the people that prayed for him.His" I am ok syndrome"is well warranted.Due to his age I don't realy know if he remembers the severe pain.I hope not and Cincy hopes not.They like to hear little kids have forgotten because if it continues these children don't remember at all what it's like to be pain free.They think it's normal and everyone feels the same way. Donna and Tree have spoke of this often. Love and Hugs Becki and 5 systemic Counting down to April Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 I have an epi-pen.. I have to get it refilled every year but its not to bad.. I'm highly allergic to Bee's.. and therefore its kind of necessary.. (poly JRA and Spondy, 19) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 In a message dated 2/20/04 12:52:46 AM Eastern Standard Time, bncknwurnumber@... writes: << have an epi-pen.. I have to get it refilled every year but its not to bad.. I'm highly allergic to Bee's.. and therefore its kind of necessary.. (poly JRA and Spondy, 19) >> : We have questioned Caitlin's allergy to bees. She was stung once and her hand swelled up to the point that it looked like a club foot. However, it was not an immediate reaction and the doctor figured it was just a 'dirty stinger'. How did they test you for a bee allergy? Was it just for bees, or did you have to get multiple tests for all differently allergies? Hope you are feeling better today. Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 I got stung by a bee and my arm swelled up to the point it looked like I had a cast on.. it was really hard and there was a red line leading to my heart.. they said I could have an allergy to bees.. then it happened again this time on my foot.. and the said that it was definite that I had an allergy to bees.. and that everytime I got stung it would get more severe.. and that it was necessary for me to carry an epi pen with me all the time. I dont I live rather close to a hospital and havent been stung by a bee in years.. but when I do go to camp or go camping i bring it with me just to be safe.. I dont know how they would test the allergy to that.. that would be interesting to find out. I was so happy to hear that caitlin got to play it brought a huge smile to my face.. there is nothing greater then seeing a child who's battling something horrible be a child even for an hour. Lots of love and hugs (poly JRA and Spondy, 19) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 In a message dated 2/20/04 2:45:58 PM Eastern Standard Time, bncknwurnumber@... writes: << I was so happy to hear that caitlin got to play it brought a huge smile to my face.. there is nothing greater then seeing a child who's battling something horrible be a child even for an hour. Lots of love and hugs (poly JRA and Spondy, 19) >> HI : Thanks for the bee information. Sounds like they like you:( How scary with the red line heading towards your heart. Caitlin enjoyed day two playing outside today:) Thank you for her well wishes. How are you feeling today? Any news as to what they are going to try next time for a probe? Take care. Patty Quote Link to comment Share on other sites More sharing options...
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