Guest guest Posted June 18, 2007 Report Share Posted June 18, 2007 Hi Donna, We just got back from a 12 hour road trip, and we packed the Enbrel in the styrofoam pack that it comes in with the 2 ice blocks (from the mail order pharmacy). Just in case, we also bought a thermometer to put in with it-just to make sure we kept it at an ok temp. The overnight thing-our hotel had a fridge and ice box, so we just put it there overnight-maybe someone else has a good idea about that. We figured the shipping package was our best bet since it takes about 2 days for it to get to us from the pharmacy, and that's how they pack it, so we figured it's got to be ok. As for the needle sizes-I think you are ok as long as you are using 27 gauge or larger-our rheumy said something about the Enbrel not being tested in a needle smaller so it might change it's biological/molecular structure-I'm not sure, it was kind of over my head Anyway, we also just use the 27 gauge both to mix and to draw and inject. Hope that helps a little. Tracey and Madi (2yr systemic) > > Hi Everyone, Hope Rob and Caroline are both feeling much better and > hope everyone else is doing well also. I have 2 questions regarding > Enbrel. 1) We will be traveling via train, we will be on the train > approx 17 hours or more and then at a motel overnight without a > refridgerator. Enbrel is mailing me their travel cooler but will not > receive it in time just wondering if anyone had any expericen or tips > on keeping the enbrel at the correct temp and also if anyone has had > experience or trouble traveling with the syringes via train? > 2)When our rhemy's office trained us to give the injections they did > not instruct us to use a 25 gauge needle to mix and draw the enbrel we > have been using the vial applicator to mix and the 27 gauge to draw and > inject like they instructed us to do, but I see enbrel has different > instructions using a 25 gauge to mix and draw. Our Rhuemy has > pediatric training but is not a Pediatric Rhuematoligist so I wanted to > see how everyone else here prepares the enbrel. > > Donna (Kailey 8, Poly JRA) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2007 Report Share Posted June 18, 2007 Hi, Many hotels that don't regularly provide refrigerators in the room do have small ones they can provide (sometimes at a charge - sometimes free) when required for medication. I have often requested a refrigerator for that purpose. Val Rob's Mom (9,systemic) Re: Enbrel Questions Hi Donna, We just got back from a 12 hour road trip, and we packed the Enbrel in the styrofoam pack that it comes in with the 2 ice blocks (from the mail order pharmacy). Just in case, we also bought a thermometer to put in with it-just to make sure we kept it at an ok temp. The overnight thing-our hotel had a fridge and ice box, so we just put it there overnight-maybe someone else has a good idea about that. We figured the shipping package was our best bet since it takes about 2 days for it to get to us from the pharmacy, and that's how they pack it, so we figured it's got to be ok. As for the needle sizes-I think you are ok as long as you are using 27 gauge or larger-our rheumy said something about the Enbrel not being tested in a needle smaller so it might change it's biological/molecular structure-I'm not sure, it was kind of over my head Anyway, we also just use the 27 gauge both to mix and to draw and inject. Hope that helps a little. Tracey and Madi (2yr systemic) > > Hi Everyone, Hope Rob and Caroline are both feeling much better and > hope everyone else is doing well also. I have 2 questions regarding > Enbrel. 1) We will be traveling via train, we will be on the train > approx 17 hours or more and then at a motel overnight without a > refridgerator. Enbrel is mailing me their travel cooler but will not > receive it in time just wondering if anyone had any expericen or tips > on keeping the enbrel at the correct temp and also if anyone has had > experience or trouble traveling with the syringes via train? > 2)When our rhemy's office trained us to give the injections they did > not instruct us to use a 25 gauge needle to mix and draw the enbrel we > have been using the vial applicator to mix and the 27 gauge to draw and > inject like they instructed us to do, but I see enbrel has different > instructions using a 25 gauge to mix and draw. Our Rhuemy has > pediatric training but is not a Pediatric Rhuematoligist so I wanted to > see how everyone else here prepares the enbrel. > > Donna (Kailey 8, Poly JRA) > AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2007 Report Share Posted June 18, 2007 We have traveled many times with Enbrel and put it in a cooler with ice packs. If you get from mail order, just use that. If you pick up at pharmacy then a small travel cooler with ice packs works fine. Haven't traveled via train but many times on bus and plane with no problems. As for injecting, if you call Enbrel they will tell you to only use the supplies they have because it is the only way it has been tested. Legally they can't tell you anything different (went to breakfast with their head honchos and believe me they will stick to the printed literature). We use to inject with an insulin syringe. Enbrel and others will tell you the hole is too small and it will change the molecular structure. I have no knowledge in this area and can't tell you one way or the other, but that my daughter couldn't handle the bigger needle due to anxiety so we used insulin needles per her rheumys recommendation. We are on Remicade now so don't know about the newer systems.Have a great trip.e, mom to joe 20 poly + lupusztaimw <nsigns@...> wrote: Hi Donna, We just got back from a 12 hour road trip, and we packed the Enbrel in the styrofoam pack that it comes in with the 2 ice blocks (from the mail order pharmacy). Just in case, we also bought a thermometer to put in with it-just to make sure we kept it at an ok temp. The overnight thing-our hotel had a fridge and ice box, so we just put it there overnight-maybe someone else has a good idea about that. We figured the shipping package was our best bet since it takes about 2 days for it to get to us from the pharmacy, and that's how they pack it, so we figured it's got to be ok. As for the needle sizes-I think you are ok as long as you are using 27 gauge or larger-our rheumy said something about the Enbrel not being tested in a needle smaller so it might change it's biological/molecular structure-I'm not sure, it was kind of over my head Anyway, we also just use the 27 gauge both to mix and to draw and inject. Hope that helps a little. Tracey and Madi (2yr systemic) > > Hi Everyone, Hope Rob and Caroline are both feeling much better and > hope everyone else is doing well also. I have 2 questions regarding > Enbrel. 1) We will be traveling via train, we will be on the train > approx 17 hours or more and then at a motel overnight without a > refridgerator. Enbrel is mailing me their travel cooler but will not > receive it in time just wondering if anyone had any expericen or tips > on keeping the enbrel at the correct temp and also if anyone has had > experience or trouble traveling with the syringes via train? > 2)When our rhemy's office trained us to give the injections they did > not instruct us to use a 25 gauge needle to mix and draw the enbrel we > have been using the vial applicator to mix and the 27 gauge to draw and > inject like they instructed us to do, but I see enbrel has different > instructions using a 25 gauge to mix and draw. Our Rhuemy has > pediatric training but is not a Pediatric Rhuematoligist so I wanted to > see how everyone else here prepares the enbrel. > > Donna (Kailey 8, Poly JRA) > Shape in your own image. Join our Network Research Panel today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 Thank you Tracey, Val and e for you experinces and advice. I dont get to post too much on here but I am so grateful to have found this board, it is always good to know there is somewhere you can go where people understand your situation. Donna, (Kailey 8 Poly) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 Hi Donna, You are welcome. This is a great place to turn for answers from those who are in it everyday. Val Rob's Mom (9,systemic) Re: Enbrel Questions Thank you Tracey, Val and e for you experinces and advice. I dont get to post too much on here but I am so grateful to have found this board, it is always good to know there is somewhere you can go where people understand your situation. Donna, (Kailey 8 Poly) AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2009 Report Share Posted July 5, 2009 The resources found here have been such a tremendous help to me since I was diagnosed a year and a half ago. So far, I've been on methotrexate (20mg/wk) which caused me to develop medication-induced hepatitis, then sulfasalazine, which had increased to 2500 mg/day, which my rheumy says is above the max dose before it began losing it's effectiveness. I began Enbrel injections almost two weeks ago. So far, I've only noticed that I've been slightly less fatigued on a couple days, but other than that, no other noticeable benefits yet. I've got a couple questions though. How long before you noticed Enbrel working, and what differences did you notice first? Any suggestions for storage of Enbrel? As suggested, I have it stored in the middle back of the refrigerator, and have placed a refrigerator thermometer to ensure that it stays within the proper temperature, but with summer, and my children and husband opening and closing the fridge, I'm concerned about maintaining the temperature. More than once I've had to adjust the temperature settings when the thermometer was reading at the maximum end of the temperature range due to opening and closing of the door, or the amount of food in the fridge (a little more due to the holiday and family visiting). After almost two weeks, Enbrel has still not initiated the first month that comes directly from Enbrel, so I was fortunate to be able to fill one month at the local pharmacy before our insurance plan changed on July 1 that requires that all specialty meds be filled at our insurance company's mail order pharmacy. Although insurance approval went smoothly, the while process to obtain the medication has been very frustrating. I am currently maintaining my current sulfasalazine dosage for now, since methotrexate is no longer an option for me to take. And any other helpful suggestions are welcome! I appreciate the input! in NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2009 Report Share Posted July 6, 2009 Don't obsess over the temperatures at which you keep Enbrel - just don't let it freeze. Don't think it would be good. See my earlier reply on this issue relating to my discussion with their hotline. Joanna Hoelscher 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.