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Author Topic: How to avoid the panic of running out of meds  (Read 3627 times)

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Offline sfca415

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How to avoid the panic of running out of meds
« on: July 25, 2006, 02:03:38 PM »
Are you waiting to start meds, or thinking of switching to a new med?  If so, this could help.

One of the top tips my provider gave me when I started meds, after years of doing everything non-pharma, was that I should get my prescriptions filled one month before I'd actually start taking them.  He had so many horror stories of patients calling him on weekends from the all-night pharmacy, or having to have something sent via overnight delivery because they'd run out away from home.

With one exception (resistance which called for immediate switching) I've done this with all new meds I've added.  Even the emergency switch worked out fine.  A friend got a month's supply of the new med for me, and life was once again full of peace.

Another tip I figured out is to take a couple of doses and place them wherever I think I might need them.  At work in a desk, in my backpack, at a friend's house.  I put them in dated Ziploc bags and rotate them with the ones I'm taking now so they don't get old.  Even the warnings about refrigerating Kaletra and Norvir don't scare me.  I keep the new bottles in the fridge, but as for the spare doses, they can be at room temp for up to a month, according to my provider.

These two things can greatly reduce that panic-stricken feeling of missing a vital part of my life-support system.  The mind-body connection and its effect on our immune system is undervalued in general ... I'm trying to reduce stress where I can!
« Last Edit: July 25, 2006, 04:04:17 PM by sfca415 »
cd4+ 617 30% undetec - Jul06
cd4+ 221 17% 32K - Dec01
cd4+ 640 41% 5K - Feb96
current meds: Reyataz+Norvir, Viread, Epzicom, Valtrex, Wellbutrin
+ 1992, first meds 2002: Viramune (nvp), Zerit (d4t), Epivir (3tc) -- (m184v mutation & resistant to non-nukes, so no Atripla)

Offline cflas

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Re: How to avoid the panic of running out of meds
« Reply #1 on: July 25, 2006, 07:45:51 PM »
Dear sfca: (san francisco?  My favorite place in the whole world!)  Thank you so much for you advice.  When I started taking meds 12 years ago, it never occurred to me to get a month in advance (of course, I thought I only had the weekend to live) and on several occasions, when I had to go out of town around the time I had to refill meds, I had to have an 'over-ride' completed by my HR department. IT was a major hassle. 
  I've carried ice-packs in my back pack for my Norvir and, at least once, actual ice cubes (that was a mess!) to keep the Norvir cold. 
  We need to collect all this sage advice and put out a pamphlet or something. Thanks again, chris

Offline Eldon

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Re: How to avoid the panic of running out of meds
« Reply #2 on: July 25, 2006, 09:57:59 PM »
Hello SCFA, it is Eldon. A month's supply in advance? Why didn't I think about that. I have to drive 200 miles one-way to pick up my meds each month. It is a hassle. Anycase, I appreciate the advice. I found it helpful.

Offline gaysaywhat

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Re: How to avoid the panic of running out of meds
« Reply #3 on: July 25, 2006, 10:36:30 PM »
Hi everyone,

This is what do to ease my mind. My insurence refills my perscriptions every 3 weeks. If you do that instead of every four weeks you ending having a surplus of meds just in case. Think of it 3 goes into 52 divided by 3 is 17.3. 52 divided by four is 13.  I also keep meds at my best friends and in my car in case i'm not by home.

Offline sfca415

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Re: How to avoid the panic of running out of meds
« Reply #4 on: July 26, 2006, 12:40:13 AM »
Thanks Eldon, cflas, and gaysaywhat.  Chris, I just read the Norvir page here at http://www.aidsmeds.com/drugs/Norvir.htm -- it says Norvir can be left unrefrigerated up to two months if kept below 25oC/77oF.  That won't be a problem for Kaletra now that it's a tablet rather than the older gel-capsule.

Eldon, a 400 mile trip each month?  Yikes ... that must be hard.  Would they do mail-order for you?  I think there are some HIV-specialty pharmacies which do that, and for sure, big national chains like Walgreen offer it.  A lot of insurance now requires mail order for more than one or two months worth of meds per year, so that puts some of us automatically into an Rx-by-mail  program. 

And gaysaywhat, that's a good idea, getting the refill early to add up a few extras here and there.  I can't do that, because ADAP here is totally anal about exactly 30 days elapsing between the previous refill and the present one. 

This might be too obvious, but many pharmacies have an automatic refill system for maintenance meds.  I'd imagine many of us already take advantage of something like that.    Also, some pharmacies let you go online and request a refill of an active Rx.  For example, something you take occasionally.  You just sign in to your account and click on the med you need to refill.  It's open 24/7, and you don't have to wait on hold.   :P

Those weekly pill boxes are great for sorting out what I need in advance, and best of all, being a memory-jogger if I can't remember if I've taken it yet -- as in "did I already take them, or did I just think about taking them?"   HIV specialists get them free from drug reps, and pharmacies sell them.  I've seen them with one, two, and or three compartments per day.

Anyone else have any tricks you use to manage meds?  I'd be interested to hear.  Hope you're all doing well. Thanks for all you do to make this a great place.

« Last Edit: July 26, 2006, 12:42:01 AM by sfca415 »
cd4+ 617 30% undetec - Jul06
cd4+ 221 17% 32K - Dec01
cd4+ 640 41% 5K - Feb96
current meds: Reyataz+Norvir, Viread, Epzicom, Valtrex, Wellbutrin
+ 1992, first meds 2002: Viramune (nvp), Zerit (d4t), Epivir (3tc) -- (m184v mutation & resistant to non-nukes, so no Atripla)

Offline Oceanbeach

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Re: How to avoid the panic of running out of meds
« Reply #5 on: July 26, 2006, 01:27:25 AM »
I have been ordering a day earlier each month for several years now and have accumulated a 1 month supply on hand.  I did have a problem with Medicare Part D at the beginning of the year.  They (the pharmacy provider) refused to fill a prescription on their formulary, because it was $1200.00 per month.  They kept the pharmacy on hold for about 2 hours, they tried to keep my medical provider on hold for hours.

I put my phone on speaker phone and waited the 2 hours for assistance.  I told them if I was ever inconvenienced by more than 20 minutes, my pharmacy or my medical provider at all, we would be working with one of the other pharmacy providers within the next few days.

Wellcare (a Walgreens Company) had only one Customer Assistance rep to handle the entire US.  Something else you should ask, most clinics maintain an emergency supply for patients who might not be able to receive meds on schedule.  This is how many drug reps try and lobby doctors, they are free samples.  Ask your medical provider if they have a supply on hand for emergencies.  Have the best day


Offline Lisa

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  • Formerly known as sweetieweasel/Joined Nov. 2004
    • http://www.myspace.com/lisanowak58
Re: How to avoid the panic of running out of meds
« Reply #6 on: July 26, 2006, 06:39:44 AM »
Hi all,
I thought this would be a good place to remind folks that I have been taking any, and all excess meds to keep on hand for our forum members. If someone finds themselves in a troubled spot they need only PM me, and chances are pretty good that I have it on hand. We have been doing this med salvage for a little over a year now, and I spose it's about time I place another post about it, so the newer members are aware.
If you change meds, and have a supply of your original meds, please keep us in mind. I'll take anything anybody can spare.
Conversely, I am able to get meds out to someone in a tight spot.
No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

Offline Lwood

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  • Here's Lookin At You....
Re: How to avoid the panic of running out of meds
« Reply #7 on: July 26, 2006, 08:06:32 AM »
I agree with 'all of the above' , my technique is to refill several days early and stow away the extras - Im also using ADAP and they're cool with me refilling 5 days before Im out of meds. my 'reserve supply' also gives me some leeway in getting refills in case of Bad weather, schedule, or generally lazy mood. I'd try to speak to someone at your ADAP program about their ultra strict policy, it seems like it would lead to alot of gaps in treatment for someone who couldnt be there on the exact day that their meds ran out.( maybe thats why your doc reccomended the 30 day wait)

As for 'Med Tips' I  have several of the daily pill dispensers and I fill two at a time, Ill pick up two more and fill up the entire months worth at once and be done with it... I keep them in the kitchen cabinet with the coffee/tea and take it out along with the morning brew..

I think that Norvir is alot more durable than the labeling suggests, Pharmacies keep it in the refrigerator because theyre anal and the Manufacturer probablly requires it because they have to allow for the different conditions in Pharmacies around the world.   I keep it at room temp with my others. I've traveled with it in my jacket pocket all (Summer) day without problems, I wouldnt push my luck and leave it in the car during summer however. Both My Doc and Pharmacy Tech told me that the warnings were due to the fact that it was a 'Gelcap'
and that the gelitan caps would melt or stick together in high heat.... Maybe in the interist of Public service, Ill sacrifice one and see just what kind of temp & Humidity it will tolerate before a Meltdown.  Hmmmmmm....
"Fortunately, I Keep My T Cells Numbered For Just Such An Emergency"
  -Either Foghorn Leghorn or Johnny Cash


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