Re: Marilyn and Enbrel

[Guest guest]

Carmen,

thanks ever so much for the information on the cooler bag in which to store

the Enbrel when travelling long distances. I have tried searching the

internet for a " medicine thermos container " etc. and I just couldn't find

anything at all! If anyone is willing to do a search for me on the internet

I would greatly appreciate it. So you got a travel bag from Enbrel huh,

maybe I should give them a call as well and see if they still have them and

if they would send me one. I haven't started the Enbrel yet, just thinking

ahead..lol! Need to have my hip replaced first. But can't wait until I

will be able to travel again.

I'm shocked the airport didn't stop and question you since you would have a

syringe/needle and liquid medicine, etc. .... strange.

Thanks again, I so appreciate your help.

Take care,

Marilyn

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[Guest guest]

Hi Marilyn,

I am remembering you in my prayers. It sounds like a very intricate

plan getting ready for this surgery!! I am glad they are being so

careful.

Marilyn, when I started Enbrel they sent me a plastic insulated zipper

bag with a handle to store ice packs with the medicine when traveling.

It is good for about 16-20 hours and then needs a replacement of ice or

a frozen packet. The word " Enliven " is printed on a blue plastic

insulated bag, much like a soft lunch box, about 12 " by 10 " by 5 " .

Call the toll free number on the enbrel medicine packets and they should

be able to give you more info. It came with a series of five or six

monthly news and teaching mailings.

Thinking of you friend, Louise.

[Guest guest]

Marilyn,

I took Enbrel injections on a cruise a few years ago. I had a 'soft

lunch type bag which came with insert packets to freeze (actually belonged to

my daughter and came with a diaper bag she had purchased). I had no trouble

with security at the airport either. I had called the cruise line ahead of

the trip as I was anxious about trying to travel with a medication requiring

refrigeration. I was told the ship had a small clinic and would be happy to

refrigerate the bag for me; just make sure you had your name on it. The

clinic was not open 24 hrs a day so they told me I could also leave it at the

front desk as they had a refrigerator as well. I opted to use the front desk

as there was always someone there who could retrieve the bag for me. The

clinic was also willing to dispose of the syringes as long as I had them in a

container while traveling from my room to the clinic. I took a large empty

prescription bottle for that purpose. Had no problems at all. Happy sailing.

Love, Barb

[Guest guest]

Marilyn,

My family decided we would take my dad and his wife on a cruise for his

80th birthday rather than doing an open house, etc. My sister was able to

get us some good rates (or I wouldn't have been going). We had about 16 in

our group and for most of us it was our first cruise, but we had a blast. We

left Los Angeles and cruised down to Cabo San Lucas on Carnival Cruise Lines,

stopping at several ports along the way. It was wonderful. I have never

slept better in all my life. There was so much food and yet I lost weight

(maybe that's why I liked the cruise so much)! I was worried about sea

sickness but my PCP gave me a prescription for a patch you put behind your

ear and I had no trouble. I was nervous about being that far from home and

my wonderful rheumy, but he assured me he would take my ship to shore call

(If I could afford to call!) The Stills dragon was very well behaved;

perhaps because of the wonderful sleep. I will probably never have the

opportunity again because of finances but I'm so glad I got to go once.

Anyway, I would highly recommend a cruise -- it is the ultimate vacation.

You will certainly deserve it after going through joint replacement surgery.

Good luck. Love, Barb

[Guest guest]

Hey Barb,

thanks so much for the info on the storage bag for enbrel. I'm hoping that

when I give the Enbrel company a call that they will be able to supply me

with this insulated carrying bag and if not I'm sure there are lots of

cooler type bags that I could pick from at the stores and buy an ice pac to

put in it. Shall figure something out anyways. Good idea about keeping the

medication at the doctor's office on the cruise ship but even better idea

about keeping it at the front desk to ensure access to it at all times.

May I ask where you cruised to and what cruise line you were on and whether

or not you enjoyed it?

Thanks for writing.

Marilyn

mhogg69@...

----Original Message Follows----

From: babsinsl@...

Reply-Stillsdisease

Stillsdisease

Subject: Re: Marilyn and Enbrel

Date: Sun, 27 Oct 2002 16:36:51 EST

Marilyn,

I took Enbrel injections on a cruise a few years ago. I had a 'soft

lunch type bag which came with insert packets to freeze (actually belonged

to

my daughter and came with a diaper bag she had purchased). I had no trouble

with security at the airport either. I had called the cruise line ahead of

the trip as I was anxious about trying to travel with a medication requiring

refrigeration. I was told the ship had a small clinic and would be happy to

refrigerate the bag for me; just make sure you had your name on it. The

clinic was not open 24 hrs a day so they told me I could also leave it at

the

front desk as they had a refrigerator as well. I opted to use the front

desk

as there was always someone there who could retrieve the bag for me. The

clinic was also willing to dispose of the syringes as long as I had them in

a

container while traveling from my room to the clinic. I took a large empty

prescription bottle for that purpose. Had no problems at all. Happy

sailing.

Love, Barb

[Guest guest]

Thanks Carmen for the information on the Enbrel carrying bag, I will look

into it.

I totally hear where you are coming from in regards to the needles, I get

the funny feeling that I'm going to be exactly like you when I begin the

Enbrel injections too. I have never been good with needles. For crying out

loud, with the diabetes glucose monitor that pricks your finger to get the

blood, I am a big suck with that and have to psych my self up just to do

that. I don't know how I'm going to manage these injections but as they say

" if there's a will, there's a way " , let's just hope that I haven't lost the

will along the way....LOL!! I too think my belly (that's full of

jelly..hehee) would be the most appropriate as there is plenty of skin to

choose from. Let's hope the needles become more user friendly...smaller

would be better!

Take care,

Marilyn

From: pscarmen@...

Subject: Marilyn and Enbrel

Yes, I received one of those insulated bags that Louise is speaking of but

haven't used it yet. I think that would be a sufficient carrier for your

Enbrel while on your trip. Marilyn, there are not any problems with

injecting Enbrel except for in my head. I just can't seem to " poke " myself

in the tummy. My hand always stops just before contact and I have to start

again. I think in all the months I've been injecting Enbrel that I've only

done it on the first try maybe five times. It usually takes two or three

" aims " before I can do it. I guess I am just a big chicken as I don't hear

of anyone else that uses Enbrel complain.... Gosh, I wish they made it in

pill form. Quite a few months ago, the Enbrel company told me that they

were going to introduce a different needle. Smaller..... )

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[Guest guest]

Louise, thanks so much for your help, it is wonderful to hear from you

again.

I'm saving your email as well as the others for when I need to sort out the

Enbrel and carrying case. I have already received my training pack which

included a step by step instructions booklet for explaining how to mix the

drug and inject it, etc. as well as the plastic mixing station in order to

mix the drug and plunger (I think it is) anyways, point is I never received

any such bag, so this got me to wondering what to do with the drug when I

travel since I have never been in this situation.

From: Louise Darlington <darlington@...>

Subject: Re: Marilyn and Enbrel

Hi Marilyn,

I am remembering you in my prayers. It sounds like a very intricate

plan getting ready for this surgery!! I am glad they are being so

careful.

Marilyn, when I started Enbrel they sent me a plastic insulated zipper

bag with a handle to store ice packs with the medicine when traveling.

It is good for about 16-20 hours and then needs a replacement of ice or

a frozen packet. The word " Enliven " is printed on a blue plastic

insulated bag, much like a soft lunch box, about 12 " by 10 " by 5 " .

Call the toll free number on the enbrel medicine packets and they should

be able to give you more info. It came with a series of five or six

monthly news and teaching mailings.

Thinking of you friend, Louise.

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