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   Travelling with Avonex (Multiple Sclerosis board)

2nd February 2008
Hi Amy...I travel with Rebif all the time; out of the country as well as nationally. with Rebif, which is basically the same drug, it says on the package and all the info I have that it can be left out at room temp up to 30 days! I usually keep mine in the fridge, but take out a weeks worth at a time in order to let it be room temp before injecting...of course for me, a week's worth, is 3 syringes. Im telling you this because when I travel, I keep mine in my carryon without any fridgeration at all...its always been fine.

First, find out if the drugs can be at room temp, if it can be, that solves your problem; however if it cant be, I would definately put it in a small cooler, even a bottle cozy would work, with one ice pack..it wont freeze as long as it isnt touching the ice pack. Rebif makes these really cool cases which you insulate the ice pack on one side, but the syringes go in the other side- thus they stay cool but not COLD and Frozen...find out if avonex offers a travel case...you can also ask the flight attendant to put your syringes in the fridge while you are onboard...and you can get some ice when you depart in order to keep YOUR ICEPACK frozen...simply wrap the ice pack and the ice in a plastic baggie for a few hours while you are traveling by car...again, the syringes shouldnt actually touch the ice or icepack..

Definately call Avonex hotline and ask them about what they can send you or if the drugs can be kept out for half a day without refrigeration...

Also, FYI, not once, not in USA or Customs has anyone EVER checked my syringes...I take them out, carry an uptodate prescription with me, hold them in my hand to show the guy at security- they have always nodded and told me to "move along" no one has EVER read the script or looked at the needles. Crazy, huh? I also take a script for solu-medrol wiyh me when I travel as well as a note from my Neuros office saying he treats me for MS, just in case I have any problems in foreign places- they have my doctors name/number/info on his letter head, a script saying ok to give me solu-medrol (IV Steroids) as well as my script for Rebif (right off the box). Ive also gone as far as to call hosptials in places like Mexico to make sure that they are MS affiliated- on the offchance that Id need a hosptial....sounds extreme but for awhile there, I was afraid to travel and was looking to cover all my bases...guess what? I never needed to be that extreme- but I felt better doing it. The last suggestion I have for you, is whenever possible, get flight/vacation insurance. I use a company called CSA Travel Protection, which you can get right up until the day you leave...its not expensive, but it gives me peace of mind that if I have to cancel due to illness- they cover my expenses...also, if you get sick while away and are covered by them, they arrange to get you home, or medical care while you are away until they can get you home at no cost. Its a good idea to cover yourself just in case....
Have a great time!!!
Hope this helped alittle.
Nikki
2nd February 2008
Thank you Nikki! :)

Unfortunately, Avonex can't be kept that long at room temp. Once at room temp it has to be used within 9 hours (I think, but maybe 12). I don't think putting it back in the fridge is an option once it goes outside its "range" - but I'll check. That travel pack is a great idea. I'm going to call the Avonex line right now. I'll post back with the results in case any one else has the same issue. I'm staying within the country - so fortunately I don't need to worry about the foreign medical stuff. But I am planning a foreign trip for the Spring - so those are all really great ideas I hadn't thought of. I'm going to look into them for sure! I've been too nervous about the meds before to travel... but now that I'm a bit more used to it, I think it's time to start living a bit and not letting MS and the meds rule my life!

Thanks again!
2nd February 2008
amy call your airlines back and ask them what youre supposed to do about refrigerated meds...they have to have an answer! Also, call Avonex and ask them...
I just flew about a month ago- the lady next to me was diabetic and carried a cooler with icepacks in it for her insulin! She showed me the prescription that she supposedly had to show them to board and we had a good laugh about how they didnt check my meds, either.
Im sure they have a way to do this, youre going to have to find out by getting to the right person.
Sorry your having so much trouble, but glad I was able to help you with some suggestions as far as what to take. Even though you are staying in the country, you still might want to carry those extra scripts with you and your doctors contact info, just in case.
I agree- it IS time for us to start living and not let our MS control US! I only started a few months ago...but in the beginning..I was really wary of "what if". No more what ifs!!
Hugs
Nikki
2nd February 2008
Amy, really sorry that you are going thru this! I just wanted you to know, I researched Avonex and refrigerator and came up with an article which says that Avonex prefilled syringes with the Luer- lock cap- have a yellow sticker on the box- can be left at room temp for up to 7 days..I dont know if thats what you have or not, but you might want to check that info by calling Avonex back. This article is by Avonex and dated Jan of 2007.

Sorry to hear they are making this so difficult for you...might I ask what airline this is? I always travel on US Airways...

Hugs
Nikki
PS just called my friend who uses Avonex pre-filled syringes. She read the enclosed pamphlet to me. Page 26 talks about storage- it does say it can be NOT refrigerated up to 7 days on the insert...this is for prefilled only, the one you mix, MUST be refrigerated. Check this out, might save you alot of hassle!! Rebif is the exact same drug in a different dose- and my insert and my doctor both tell me its ok to leave it out for up to 30 days! And, I have, and nothing has ever happened.
4th February 2008
Hi Amy. Im glad you got it all sorted out! And, youre welcome. Im a manic type person to, which is why I am sitting here wondering what information they gave you and why it isnt the same as the pamphlet that Im holding in my hand.
Im holding a printout from a local chain pharmacy and also the insert from a box of Avonex. I saw my Neuro today and asked him if he had any literature...what Im reading totally contradicts what you told me. And, I dont know why.
This says the UNmixed Avonex MUST be kept refrigerated at all times, and the PREmixed Avonex may be left unrefrigerated up to 7 days. This is dated 12/07about 2 months ago....its the same thing I saw online, on the Avonex website.

I dont want to confuse you anymore, so Im going to leave you with this thought, do you have an insert from your box ? IF so, its on there..and if you are positive that you are comfortable doing it the way you explained then HECK with it. Take the icepacks and do it the way the airline gave you permission to do it...either way, HAVE A GREAT TRIP!
Im really sorry if im confusing you...I dont want to be right about this- I want you to be right...but my mania has me telling you all this because Im reading it first hand off the company info....
hugs
Nikki
4th February 2008
Hi Nikki,

Humm, I really don't know. Maybe there are just different kinds / versions of Avonex prefilled? I guess the lesson is to always check your specific one?

Here's what the pamphlet that came with my Avonex says in the "How to Store It" section:

"The vial of Avonex powder should be kept in the refrigerator at 2C to 8C. If refrigeration is not available, Avonex can be kept for up to 30 days at room temperature. After mixing the avonex powder with the dilutent, the Avonex solution should be used right away or within 6 hours when it is stored in the refrigerator at 2C to 8C. Do not freeze Avonex solution."

The above doesn't apply to me because I'm not using the powder and mixing it myself, I'm using the prefilled syringes (i.e. the ones that already come all mixed and already in the syringe). The pamphlet continues:

"The prefilled syringe of Avonex PS must be stored in a refirgerator at 2C to 8C. Before your injection, the syringe may be taken out of the refrigerator and allowed to warm to room temperature over 30 minutes. Do not use external heat sources, such as hot water, to warm the prefilled syringe. Avonex PS must be used within 12 hours after taking it out of the refrigerator."

The above, about Avonex PS, does apply to me - since that's what I've got, the Prefilled Syringe. So I just don't know why we have different info. I'm going to ask my neuro about this because if there's a prefilled version that doesn't require refrigeration, I'd much rather have that!
4th February 2008
Hi Amy. I wonder if there ARE TWO different prefilled types...possibly they changed the formula and it did come with two differnt pamphlets. Wow. Intersting. I know so many people on Avonex, the people I asked about this, all tell me they leave the medicine out the night before their injection, as they were told to do by their nurse- in order for it to be room temp and it injects easier...thats very closely related to what MY nurse tells me about Rebif (again, same drug). When I leave it out most of the week and its "room temp" it doesnt burn as badly as when I take it out 6 hours before the injection...

Strange that two pamphlets for the same drug could have such differnt directions...but YES I agree with you. DO what it says comes with YOUR drug! And, since you got good info from the airline, thats probably your best bet.

Like I said earlier, Ive never had a problem with my drugs on the airline- hopefuly you wont, either...
Interesting thread, and I think we all learned something about checking, double checking and READING before jumping to conclusions...thanks for bringing this subject up!
Nice chatting with you.....:D
Nikki
14th April 2008
hotflash, depending on what drug you are taking..it might be okay! I leave my Rebif in my carryon without refrigeration and take it that way...my friend takes her Avonex in her carry-on bag without refrigeration and it says right in her packaging that its ok to leave at room temp up to 7 days...so CHECK your packaging and see which meds you have, or call the manufacturer! Then, youl know for sure....but do take that letter from your doc with you, just in case..
n
 
 

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