PSA for the noobs... STOCKPILE!!!

[zach]

So here you are... newly diagnosed, and not yet (or recently) on meds. You're a little intimidated by the life long commitment, (trust me, it's better than marriage, but y'all keep up that fight) but you're eager to take control of your health and race to the Undetectable finish line. I feel you, it's fun playing Whac-A-Mole with HIV.

Ready, set... whoaaa... just for a second... give this some thought.

There will come times when obstacles and barriers to access rear their heads like game bosses ready to crush you, a smug monster of a woman behind the counter, brown paper bag in her claw like hand, with a post it note spelling your doom. I'm sorry sir, we can't give this $2000 life saving medicine to you today, we have these flaming hoops of death for you to dance through first. Dance bitch dance!

In these times, especially when you're new to taking meds your anxiety is going to shoot through the roof. It will feel like you against the world. But but but, ADHERENCE!!! We're sorry sir, you have forms to fill, miles and miles of forms! We don't really give a shit about your adherence, we have to follow policy sir. Please make an appointment with someone that gives a shit.

This is when a small stockpile of meds comes in handy... now don't go all mall ninja eotwawki prepper, but put some away for a rainy day.

Here are a couple game winning strategies, cheat codes so to speak, and maybe some of the LTSers will give some sage advice as well.

1. Check with your dispenser, usually you can get meds a little earlier each month. For instance, you pick up on the 20th of the first month.... I am able to get meds six days prior each month so on the second month I pick up on the 14th, third month I pick up on the 8th.... those six pills extra each month become surplus, in three months I have 18 pills (because math bitches!)

2. Somewhat controversial maybe. Don't follow this advice if you are diagnosed with low numbers. If you have teh AIDS, take your damn meds as soon as in hand. But if you catch your virus soon after infection, with great numbers to start... you can get away with this. Here you are, excited, your very first bottle of meds in hand on the 20th... just wait a week or two to begin, and still follow step 1. Certainly tell your doctor you've done this, and why, don't ever lie to your doctor. Even two weeks is kinda long to wait, doctor will be scheduling a follow up to do lab work that will test the response and efficacy of your meds, don't want to mess with that. I dosed my most recent regimen once two weeks were in hand, within two months I had was a month ahead. That is how I spell relief.

No big deal monster lady, I got a month built up. I WIN BITCH!!! I'll be at the dog park while y'all sort your shit out. C'mon dog, we're out.

The only caution with step 1, some medical/insurance plans only allow a certain number of refills in a year. Ask them. If so, you'll take your surplus the final month with no refill, and repeat the process each year.

Rotate your stockpile! Keep your meds fresh. Once I have 30 pills stockpiled, the next time I refill, I don't open the bottle. My stockpile gets taken first. Then I refill meds each month, but take the meds I filled the month prior. Now you are a ninja game master!

Why am writing this now? Other than being high and letting my thoughts drift around the room and float out the window? Because without my stockpile, I would be without meds for going on two weeks now. The bureaucracy of renewal... upstairs adap, downstairs ryan white... no sir, they accept that as proof of residency but we need this, please come back.. blah blah blah blah. Your first born sir, sacrifice him to please us. Sir, sir, please come back tomorrow sir. Sir, we're sorry for the inconvenient drive sir. DANCE!!!!! mwuahahaha

It doesn't stress me out, I don't run around like a chicken with my head cut off. I smile and go home, look lovingly at my stash of meds next to my stash of flowers... and it's all good man, in a fog of smoke. I'll go back down to the clinic tomorrow with the dog, maybe pick up my meds, maybe not, but we'll damn sure go to the dog park again.

So, anyone else have other ideas on how to stockpile meds? Also, last resort, if you know you're going to run out, shout out to the boards... we try to help. Don't wait to the last second.

[leatherman]

First off, this post was hilarious, Zack. While this was another version of a horrible experience some of us have gone through; you're dead on using humor to get through it. Secondly, what a great idea for a post! Having a stockpile, a pillbox, and a keychain fob for pills are essentials elements of a good adherence regimen.

Because without my stockpile, I would be without meds for going on two weeks now.

when I moved from OH to SC, there was a "lag" before getting my meds, paperwork and health care switched over. Without my stockpile, I would have been without meds for 3 months!

[TheNormalLife]

Great advise came with a great laugh too.

Most of the e-friends (including Zach) and people I have personally met living with HIV have told me to stock a little bit because sh!t happens. It could be a WW3, it could be shortage at the clinic, it could be a long trip or simply because Murphy's law.

Talking 'bout being high. I am getting one intense trip with my Efavirenz right now; took it sharply at 11:55pm and whooooa, it's giving me quite a ride.

Ray.

[Anthony75]

Because my esophagus is so closed up, my meds are liquid and because of that there was a week delay in getting them so I could start. Luckily I have decent insurance and have already met my max out of pocket so I have until January to save up for next year. Stockpiling is a great idea that most new people never think of. I didn't until I read this. Thanks!

[Darkling_Cub]

Gave me a giggle to be sure...

Fortunately, I suppose, I have an extra month supply on hand at all times due to, my ID wanting to be sure I didnt have any adverse reactions to 5 antibiotics I was prescribed after spending 2 weeks in isolation for PCP treatment.

I didnt actually start taking my ART med(Atripla) until nearly 4 weeks after my ID actually prescribed them, so of course the pharmacy calls me every month to let me know the newest scrip is ready just as I am about to open the last bottle I picked up.

Stockpiling made easy for me at least.

Darkling

[AusShep]

I'll give this a bump considering I just had use a 30 day stockpile of Truvada.

I've always been an advocate of filling a few days early each month in order to build up a reserve supply.  Taking your last pill while waiting for a refill coming in tomorrow a couple of times will teach you to do this. 

My insurance accidentally got switched to another plan on May 1st.  I realized his on May 4th when my Rx pickup would have cost about $3,000.  Everything was fixed by May 5th, but insurance plans just change on the first of the month, so I was pretty well screwed outside of insane hoops that would haven taken weeks to navigate.

The good news is that the Tivicay copay plan can be used all at once, so I was able to get a months supply at no cost.  Gillead/Truvada pretty much sucks in this regard, cap at $400 a month, so it would have still been $1,000; so after the many hours it already took to get the insurance plan switched back and Tivicay taken care of I just dove into my stockpile and didn't worry about it until I went to pick up my new refills on June 2nd.

[pozessed]

Thanks mate. Had never to about this aspect considering how critical meds are for the overall treatment in this  case.

[zach]

I've been a little sloppy, and want to try to clarify

Surplus vs Stockpile vs Reserve... and does the word choice matter? I am guilty of using the word stockpile to broadly cover the topic.

What we're talking about fits the word surplus or reserve a little better. If you fill a 3 month prescription, you certainly have a stockpile... but not a surplus. Many of us are forced to refill monthly, and will run into refill issues more often.

Subtle but important distinction I just wanted to point out. Having a surplus stockpile held back in reserve, ahead of your regular refill schedule.. is a valuable thing. And that is the point I was trying to drive home with the original post.

The goal here is to have some meds in reserve in case when the refill date comes around... and some unforeseen obstacle pops up (and they will) That way, even if you are beyond a refill date, you don't get caught without meds. Skipping doses is what we're working to avoid here, stay focused on that. Just enough to tide you over until the grinding gears of the bureaucratic system we're dependant on decides to hand us a new bottle of meds.

I feel like I've been less than precise. Sorry if I've been part of contributing to any confusion. Sometimes I feel like my posts should have a neon flashing disclaimer.
CAUTION, LISTEN TO THIS IDIOT AT YOUR OWN RISK. POSTER IS PROBABLY STONED, IGNORE... SHOULD NOT OPERATE A KEYBOARD AND THINK AT THE SAME TIME... THIS GUY? REALLY? HE EATS WITH A WOODEN SPOON, THE 100th MONKEY WOULD BE MORE HELPFUL

And good news... I have found an additional tactic to deal with the little monster lady... hot fresh Krispy Kreme donuts, the light is on! Works like a charm, she thinks I'm just a darling. (she doesn't know I call her a little claw handed monster, but why spoil it)

[leatherman]

Having a surplus stockpile held back in reserve,

are you in some sort of competition to have a single sentence with the most synonyms? LOL

It seems you were still a little sloppy and certainly that line is no clarification.  I think if you leave well enough alone (did I miss someone in this thread not understanding the concept of stockpiling meds?) things will be just fine.

[zach]

there is another thread where a couple guys are both saying stockpile, but one obviously means surplus.. and one is happily sitting on a three month refill not getting what the fuss is about

i was going to post in that thread, and cross post to this one... but i kind of already agreed with you... leave well enough alone. didn't want to butt into a conversation i wasn't part of

sorry for the obfustication,   

but i got an even better one too

supernumerary

su·per·nu·mer·ar·y
ˌso͞opərˈn(y)o͞oməˌrerē
adjective
1.
present in excess of the normal or requisite number


edited to add... i get the feeling that some noobs totally don't get it at all, and maybe won't until they're not able to refill one time and aren't prepared

[TheNormalLife]

Yeah, I think the right term is "reserve"; have some extra in case Walgreen's gets sucked by a tornado or something like that.

Obfuscation. That word I didn't know, find it pretty and now I'm using precious brain space for it. Thanks Zach.

Ray.

[shaunsag]

Great post! I was told, that under the assistant program I am on for truvada and tivacay they will only pay for 9 refills. So I will wait till I get around the 6th month to start, saying ok, what next. Great post, and I will keep the stockpile option in my head.

[mecch]

Great post! I was told, that under the assistant program I am on for truvada and tivacay they will only pay for 9 refills. So I will wait till I get around the 6th month to start, saying ok, what next. Great post, and I will keep the stockpile option in my head.

shaunsag
would you please elaborate and clarify.  Who will only pay for 8 refills??  The drug company via some assistance program? Per year? 
The social service agency you went to, hooked you up into what PERMANENT scheme to access medical care and treatment.
If you are HIV+, you had best find a way for something permanent...


Also, what are your numbers?  Are you in good shape to wait 6 months untreated?

I am simply worried that you are not fully hooked up yet and you do need a permanent supply of medicine once you start.

[michaelzalnasky]

Zach
Great post very informative and your suggestions are justified
Here is an example of why a stockpile is smart
I just experienced first hand how valuable a stockpile would be...
Recently terminated By Cobra because of a so called late payment yet my check was prosessed in time oh but it takes up to ten business days to derermin and usually once Cobra terminates it's unlikely they'll reinstate...
Not wanting any delays I went to R.W. & ADAP
Cleared for full eligibility so last month was my first experience with the ADAP Pharmacy they set me up on an automated system that will let me know by phone 3 days before Meds are ready
Well I waited I called no answer waited some more well after a couple days I finally reach a human so I question why I wasn't notified
Oh you see she said your phone # is a 412 area code that's out of state so our automated system won't call out of state numbers
It's a cell phone I've had this number for 10 yrs no need to change
Well this was Thursday afternoon they're closed Friday for 4th of July weekend
A friend said don't go Monday it will be a zoo due to holiday weekend
So I went today but my point is I went all weekend without all my Meds except Isentress & Valcyte which somehow I have a little stockpile !!!
Scripts all filled and back on track but calculating a way to stockpile

Zee 🙏🏻

[TruPoz]

Another personal experience to promote Zach's suggestion:

4th of July weekend I was due for a refill, which I tried to refill 5 days early to help build my stockpile but the pharmacy didn't order in time so I had to wait until after the holiday weekend to refill. Luckily I had a small stockpile from refilling last time early, because I used 5 days worth of it. I plan to refill as early as my insurance will let me (25 days after last refill) just in case this comes up again.

Adherence is our best weapon to keep the virus in check. Let's all take Zach's advice and use every tool available to make sure we have our meds available to us every time we need them.

[mark45122]

I was wondering about this. Im new to this whole taking meds and such and have ben worried about running out or insurance issues or something. I will keep this in mind when my 90day supply starts to dwindle down closer to the refill date.

[Joe K]

While adherence is the goal, please don't stress if you miss a dose or run out of pills for a day or two, as it will not effect your treatment.  Having a stockpile is a sound strategy, but stress and anxiety are not good for us, so keep your stress levels in check.  I've been poz for decades and I've missed my share of doses, yet here I am, with the best numbers I have ever had.

Consistency is the goal and an occasional missed dose will not hurt you.

Joe

[zach]

the irony of searching for this thread to show the patient advocate at the clinic is the only laugh i've had today

almost exactly two years to the day, and the exact same set of circumstances have again put me in the exact same position

everyone deserves a vacation, but damn, cross train someone to cover the absence... that doesn't seem like a revolutionary idea

[paintedroom]

Good to see you around zach,i always enjoyed your eye for language and picaresque flourishes.

i had half an eye on some film the other night about a struggling writer who couldnt get out of the blocks and somehow found the panacea to all his problems with a pill that made him an electrified polymath Bruce lee with a Wall street disposition.Anyway,as with all good things the piper must be paid and the come down was nasty with a reboot requiring another pill or an ugly end a dead cert.The story was not that interesting but the relevance will not be lost on anyone on this fair forum.And so my dark flight of fancy then developed into the now well worn trope of the zombie apocalypse and what would happen to us all if we couldn`t get any smarties.Well,i`m sure in this clearly preposterous tableau no one would blame me if i kidnapped a clutch of chemists and disappeared al la kaczynski into the woods somewhere.Now i only mention this scenario as a means to plant a few seeds because we will need a few test tubes and a bunsen burner etc and i figure you gents and ladies might like an in.I suggest we all begin knocking around the bars that chemists go to,casual like at first and then build more conducive relationships.I wont say any more for now as keeping schtum is all important.
But yes,there`s practical wisdom in stockpiling.

[Beaner61]

This brings to mind something I am currently doing to increase my stockpile/reserve/whatever.  My Dr. decided to switch me from Stribild to Genvoya a few months ago because my kidneys weren't quite liking the Stribild. 
Thing was, I had 3/4 bottle of Stribild at the time, but he wrote me a script for the Genvoya immediately.  I thought about it briefly, understanding that Stribild and Genvoya are very close to each other (3 out of 4 of the meds are the same, the fourth being a slight variation), and decided this was a worthwhile risk for me.  So I refill on time with my Genvoya, but take 4 or 5 Stribild at the end of each bottle of Genvoya (figuring I can stress my kidneys a little bit in exchange for having extra meds "just in case.")

Now, I'm no medical professional, and it's my health I'm playing with.  But I do feel better having almost an extra month in the "bank."

[zach]

Hey kids, storytime, grab some popcorn and beer... (who's watching the Comey testimony?)

Writing this as much for posterity as anything. My post at the top of this thread served me well, glad I had it to reference... it illustrated my point better than the rage fit I was in. I hope I never have to point a clinic administrator to this post (Mrs Carter, if you're reading this somewhere down the road, that charming grin on my face is because I'm thinking about murdering someone)

The past few days have seen big ups and downs in my treatment. Seven years ago, diagnosed with a CD4=8. Monday, my most recent lab results started to come in, CD4=273, that is the highest I've ever seen, and only the second time I've been above the threshold.

I was damn happy about that.

Tuesday, my viral load came in. I had been without meds for three weeks when that lab was drawn. For the first time in 6 1/2 years, I have a detectable VL. 2.61 log 10, that's about 400 absolute.

That was really fucking disappointing. Holding myself accountable, I should have seen it coming, and been more proactive, and been a more vocal advocate for myself. Instead, I allowed myself to be put in a position where other people's actions led to my lapsing off ADAP. Two pieces of paper not being submitted in a timely manner affected my continuum of care.

I spent a couple weeks in hospital in April. Came home with a Picc line through my armpit into my heart for a week. I wasn't exactly mobile.

I was scheduled to renew ADAP in April, I missed that appointment.

I burned through my stockpile, then the ADAP rep went on vacation... so fuck it, I took a med vacation.

I went without meds for three weeks. Once each week I went into the clinic and pressed the issue. The (lack of) response I got was... infuriating, disappointing, and demoralizing. Patient care was clearly not item of the day.

On May 22,  I reminded people I'm a natural born asshole. I got a bottle of pills by insisting I wasn't leaving the clinic without them. 6 desks all pointing to the other guy, I got results when I went back to the first desk and started cussing in hillbilly.

Morals of this story, there are a few.

• Stay out in front of all paperwork that is necessary to keep you in meds.
• STOCKPILE, beat that into your skull!
• If you dip into that stockpile, that needs to be a loud warning siren to take immediate action. Don't wait until you're out, Murphy will dry fuck you.
• Be your own advocate. Be strong, but don't murder Ms Carter, she's just doing her job.
• Keep a treatment journal, it helps to organize thoughts and establish timelines. It helps to keep questions for your medical team in order.

Little catch up on my life. Youngest son graduated High School with honors, sent him to Europe for a couple weeks. There was a time when I hung on just to see that day. Now, I'm past the fear of this bug killing me. I'll see grandkids graduate one day.

Next week will be a first. Going to a Dead show with my sons and father. Unbroken chain, three generations of heads. Big bag of Haze from Denver, a bag of shrooms from Florida, and a cooler of Sam Smith Oatmeal porter. Kind veggie burritos, drum circles, granola girls that smell of patchouli. Looking forward to it all.

All in all, life is good. My VL will fall, I'm not that freaked by it. Hope everyone here is well, hello to the new kids in class. Love and hugs to more than a few of you.

Zach

ps.. i miss joe, bittersweet to see his words so near mine again, and not paddling me! so much wisdom these new kids will never hear. i'd love to piss him off one more time.

[newbie2016]

Nice to have some wit and a smile reading your post helped after my last script bulls up which I found rather stressful however long we can go without I prefer to be in supple than not.
I have decided to put a reminder on my mobile phone when it is due, make the call,
human error and all but for some of us we could do without it.