Shots and Meds

[AMERIBOI2003]

To my HCV family,
     Merry Christmas to you all!  I hope that this finds you all doing as well as can be expected.  Just a quick question about the meds.  I begin tx in Jan and wanted to know if you guys thought it would be a good idea after I receive the meds to  hold onto them for a week and then begin.  That way should there be any glitches or unforeseen problems at least I would have a week supply and time to get whatever would could come up taken care of?  Secondly I travel alot so what is the best way to pack the meds should I need to?  

Ladybug52....how are you doing?  I think of you often as well as the others.  Please let me know how you are, OK?

In Him,
Rick

[Myown]

thanks,, everytime i turn around i think of something else that i don't know the answer to,,so thanks,,,,i would hate to be taking meds that are not useful because of something stupid i did and,,, i did worry about putting them in a cooler with the ice pack,,becasue that isn't room temp,,but i guess for a short trip its okay,,,then again who knows, maybe not. pocket next to body is probably best or pill box as you mentioned. it would be pretty horrible if relapses or people not achieving svr were in any way related to riba stored at too low of temps and what ever else...probably not,,but i'm in limbo and chomping at the bit,,,,and questioning everything in my mind.

i feel like the horse at Aqueduct before they start the race and they are all lined up in behind the gate,,,,you can only keep them in that position for real short time,,they are frenzied knowing what's in store,,,"immediately" after the last horse gets into position and bang, they are released in a blink, they're so pumped, they can jump the gun, so get them out quick,,,,,well,,,i've been behind the gate for so long,,frustration on top of frustration,,all because people don't do their job and I am now at my wits end,,so i am checking and re checking everything,,can't sit still much longer.

But no one but people here going through same can relate to what i say,,even if i did tell someone, but i don't.

[compulsive]

uh - when I moved, all my meds were in a cooler, the riba too.  I don't think the riba is as sensitive to temp changes as the peg.  Just don't let it get really hot or freeze and it'll be ok.  Also - the times I am "out for the day" (it's usually cold here too) I just put the riba in a little pill box in my pocket...

[Myown]

when you guys travel and put the interferon in the cooler,,where do you put the riba?

thats supposed to be room temp, right? just wondering. also because with the cold winters we get here,,was wondering how do you keep riba warm if i was out and about walking in the city or something. Just keep it in your pocket next to your body? i know it probably is a real stupid question, but i am really wondering??

[sfbaygirl]

What was REALLY funny is that John saw the KY come out of the purse and got this silly grin on his face. He didn't know I had it. I'm surprised he didn't have to put his coat in front of him!

[hippygem]

hippygem - what have you done since 2004? What was your liver bx report? Are you considring treating again? I just relapsed (geno 1a) is why I ask.
frijole

Hi friole

My fibrosis dropped a stage from 3 down to 2 after treatment in 2004.  Im in Australia, they wont let me do the treatment again.
At this time I take vitamins to help me feel better, and 5HTP with Activated B3 for depression.
The post tx problems are an issue still, cant remember things, have to write everything down. Still confused in mind on bad days, anxiety.  CFS is still there, but I just push myself to do things, I believe exercise to be very important, diet  etc.
I dont think after reading so much on interferon/riba that I would treat again, I will wait till something more friendly comes along.

Sorry to hear you relapsed, its the worst news isnt it.  Take care of yourself now.
What was your biopsy like after treating?  How are you Post Treatment?

Linda

[MissMiss]

Ha, you just made my day.  Hey, wouldn't it be a real mean trick to put that in our hubbies carry on?  Oh, well, then we might pay a price we can't or don't want to afford.  Oh my goodness, I'm still laughing!

miss

[sfbaygirl]

Yep, I think your brain is working better! I do the same thing when it comes to packing and moving things around. I was really peeved when I had to throw expensive makeup away that was loose in my purse. The most embarrassing part was when they pulled out the KY jelly, held it up for everyone to see before tossing it in the garbage. NO, I don't think I'll do that again either. LOL

[MissMiss]

Weelllll, I don't know about thaaattttt.

Lol, you made me realize maybe my mind is better!  I gotta share what I did a couple weeks post tx while going to the Road America race in Wisconson.  I packed everything real nice and at the last minute moved a couple things around cause they fit better.  This was right after they made the rule about ziplocs.

I had bought my hubby some special little travel size thingies and I had all my mascara, etc in one bag like they said.  But wouldn't you know it, they fit in my carry on bag better!  

You should have seen my husbands face when security pulled me aside.  I ended up running that bag all the way back to ticketing to check it.  My legs were hurting so bad!  

Of course, I'll never do that again.  I don't know if it was brain fog or a brain fart!  Either way, I won't forget again.

miss

[sfbaygirl]

Wow, you thought of all those unforseeables? Of course you aren't on tx now, so your brain seems to be a little clearer than most of us out here!

Ameriboi; You may need a baggy with any liquids etc. I have been a bit peeved to have to throw away lip gloss cuz' it wasn't in a ziploc. I think ziploc is making all the rules. They sell those little bags for 50 cents in the airport store. What a profit! I took my meds to Jamacia in a cooler, before the carry on ban. A few weeks ago I put my little ice chest, with the ice things they are packed in, into my check in luggage and no problems.

I have a big box now!!

[GrandOak]

While MS might like to take credit, "HTML" is a WWW thing, stands for "Hyper-Text Markup Language".

Basically, this is the coding language used for all web pages, yes even these forums Virgina, which allow browsers to display the variety of page layouts you find.

Perhaps not very clear in layman terms and may raise more "huhs?", but checkout:

http://en.wikipedia.org/wiki/HTML

for a more complete description, although it may also be more technical than some folks might understand.

[AMERIBOI2003]

Once I get through this Christmas season of flying, I will have more of a set schedule....a set day of injection.  I am so glad to hear from you and that you are experiencing minimal sides.  Do you know where I can get the cool wraps from so to keep my meds should I need to carry them.  I am going to have to work while doing this because I  live by myself...I am hoping to be able to manage the flu-like symptoms with something over the counter.  Any suggestions ?  Take care of yourself for all of us, K?  
In Him,
Rick  

P.S.: Are we allowed to give e-mail addresses?

[ladybug52]

Little lunch type bags at a place like target or walmart would fit the need. You can get the little soft pack (gel) type freezer bags there too. Maybe would be in the sporting good section this time of year.
It's hard to give out e-mail address. We're not suppose to but a kind person once snuck hers in for me.
Good luck with tx, I took alleve that's all I had, I've heard tylenol pm is good.
Do you still have the same address? I have saved that and could send my e-mail?
Janice

[friole]

Rick - are you using Pegasys or the PegIntron?  Pegasys has a lovely getting to know you kit that includes a carrying case for trips -- room for vials and syringes and (I think) a small soft cold pack to use in it.  Don't forget, if you are traveling by air you will need to put all liquids in a zip lock plastic bag.  

hippygem - what have you done since 2004?  What was your liver bx report?  Are you considring treating again?  I just relapsed (geno 1a) is why I ask.
frijole

[AMERIBOI2003]

Your right!  I just needed others perspective.  Thank you so much....

[AMERIBOI2003]

Hey guys,
      First of all I just noticed that I have a bigger box to type in...:)  So now I know that I will not be rewriting any questions or thoughts over and over and over and over and.....:)   I am a flight attendant so the flight restrictions for crew members are not as strigent as what you guys have to go through.  I have vacation on Jan 24th and the night of the 23rd will be when I begin.  YEAH!  So keep me in your prayers.  I had my Dr's appt today and we took all of the time we needed to discuss rescue drugs and everything that was to be expected.  For those who may not know I, unfortunately, am coinfected with HIV as well.  I started about three months ago on new medications and have gotten the test results back from blood drawn about 2 weeks ago to see how the new meds for HIV were working.  They were great!  High T-Cell count, and an undetectable virus.  I have always been compliant when it came to taking my meds for the HIV and it pays off every time, so I too will be compliant in taking the meds I need to take for HCV and know that prayfully it will pay off in time too.  Keeping the faith..... Thanks for the info on packaging the meds should I have to travel with them.  On my way to Target tonight ..... you guys are the best....

Ladybug52, yes, my address is still the same would love to hear from you!!!!!  Hope that all are doing well!  

In Him,
Rick

[MissMiss]

Having a week or two (or more) on hand could prove to be very useful for a few reasons.

Suppose we have another Katrina and shipping gets clogged throughout the nation.  An extra week could save the day not having to delay a few days taking your meds on time,

Suppose your insurance is holding up the refill because the doc hasn't gotten his paperwork in on time.  This has happened a few times.  

Suppose your pharmacist made an error in ordering the right thing or on time.

Suppose ins totally denies anymore meds and you need to go through the process of getting it from the manufacturer.  This might take an extra week to do so.

Suppose it is Christmas time and all shipping is clogged.

Suppose we have another terrorist attack somewhere and all planes are grounded and shipping is halted nationwide.

Suppose you have to be out of town for an extended period and need to take more than four weeks with you.

There are lots of reasons to stay ahead of the game with meds cause one of the worst things that could happen is a break in tx because you just don't have the meds on time.

miss

[APKhaos]

Double what Frijole said about the Pegassist kit.

The travel pack is a winner. Load the shots with the freeze pack for the flight, then drop the pack in the fridge when you arrive at the hotel. I started out insisting on rooms wiht a fridge [which is easier], but found that most hotels are really cool about storing your stuff in their fridge and freezing your freeze pack in their freezer.

DOUBLE EXTRA ALERT: If you are travelling, be SURE to get a carry letter from your doctor, signed on his/her letterhead. TSA will take your Peg if you don't have a carry letter saying that the Peg is your chemotherapy threatment and needs to be kept chilled. This applies if the Peg is in your carry-on AND if its in your checked baggage.

[hippygem]

I would like to wish everyone a Merry Christmas and Happy New Year.  This section of the forum is certainly different, still cant post in the other one.  Anyway, take care you all, hope the treatment is being kind to you that are on it at this time.
(geno 3, fibrosis 2, relapser, tx 2004)

[ladybug52]

I brought my first redipen to the dr.s office in a little soft wrap that USED to used for chilling wine. I was riding with my husband reading the directions and noticed it said to warm to room temp prior to injection. So I took it out and stuck it in my purse. Not literally stuck it-placed it!
Bug

[avidreader]

My advice would be to go ahead and get started. Generally, the mail order pharmacies let you order a little early and by re-ordering on their earliest refill date you will be able to build your own little safety cushion without delaying treatment. I traveled alot on treatment. I bought a very small soft pack cooler and used soft pac frozen pillow type cubes. I liked them because 1) they didn't melt and leak and 2) I could 'bury' the meds in them. I never liked the hard frozen packs much. Even if you screw up, the inteferon can be kept at room temperature for up to 24 hours--just be sure NOT to freeze it.

[ladybug52]

What are you talking about?

[revenire____]

I just noticed that. What's up with that?

[ladybug52]

So happy to hear from you!! I did my 2nd shot last Friday (sort of-- it became shot 2 and 3 since I forgot to take the cap off the redipen on the first one!)
So having said that I can understand why you would want a back-up. Do you get a month's supply at a time? I talked to the Be in charge hotline and they are giving me another redipen @ no charge. I guess with your travel schedule you want to have the meds readily available. What if I had messed up on the 4th shot and had to wait days to get a new supply? I would have been bummed. You will have to have a small cooler for your injections when you are traveling. Do you plan on working thru this? Do you have a set schedule so you can designate shot night and not have anything planned the next day? I was flu-like after the first shot.
I have very minimal sides, just heightened anxiety and a little paranoid. Nothing that laughter doesn't cure. I get all serious and then I have to remind myself this isn't the person I want to be. I want to be more like Him.
Hugs from Bug,
Janice

[sallyo]

I understand that getting started as soon as possible is important.  I also know the frustration and sense of things getting "out of control" when you are waiting on meds that have not arrived. Personally I like having a little stock pile.  Never planned it though just got behind a couple times due to labs or illness.  There have been times due to mail, holidays, missed messeges, authorizations etc., when I'm galad I had an extra.I too likely will start treatment in Jan. Know what to expect so should be easier in that respect.  Best to you