Do You Hoard Meds?

[PrimeTimer]

Ever go to pick up your prescription but they can't give it to you because their computer system is down? And then a 1 day wait turns into 2 days? My husband is pretty good at getting his meds refilled before he runs out of one but the pharmacy's system was down and it made me wonder -should people hoard meds? I am wondering if we should put away a few at a time in case he can't get a refill in time. Of course, we'd have to keep track of dosage and expiration dates but this might be worth doing. Perhaps this is something people have been doing for a long time and we are just late to the table.

[iolaire]

I feel like I should horde my transplant medication. That might be hard given they don’t want to give me pills early. I’m sceptical of experation dates so I’d keep it much longer than they say I should. But generally I use the bottles until they are done so I’d use the newest last. 

[Simon Dog]

You need a cooperating MD who is willing to prescribe more pills a day than you actually take.

On a related subject, I bought a 3 compartment keychain from Amazon https://www.amazon.com/gp/product/B07D6KV6FV so I always have a couple of doses of Prograf and Cellcept on my keychain.  I figure it will come in handy if I ever get stuck somewhere and cannot make it home in time for my next dose.  The other pills like Phosphorous and Magnesium supplements can wait; the immunosuppressants can't.

I feel like I should horde my transplant medication.

It's only hoarding when someone else does it.  When you do it, the term is prudent inventory management.

[GA_DAWG]

I do think it is wise to engage in........inventory management.

[UkrainianTracksuit]

I'd feel a lot more comfortable if I could hoard meds. When I had 10+ boxes of Advagraf, there was a kind of quiet ease. One box of 50's barely lasts 2 weeks. The tx hospital is very particular how they write out prescriptions for a 3 month supply, so after living for a couple months near the center (and having more access to them), the supply originally hoarded went down when I got home.

The pharmacy has its limitations too. I thought I needed a box of Myfortic as I didn't think I picked it up and my subsequent box wasn't in its typical place. So, the pharmacist checked my records and said, "I can't give you that. I just gave you a 3 month supply a month ago." Oh o.k., so that means it was somewhere at home...which is was... but there are two layers of no's here.

My husband and I are thinking about going home for a bit in the spring. There are none of the drugs I need in the whole administrative district. He called around and even the hospitals. He used his connections to ask where other people would be told to piss off. We expected it. Naturally, it could be ordered from the capital, but how long would that take? So I want to ask my doctors here for a prescription to be filled here for a hoarder's amount of immunosuppressives. We'll see.

TL:DR ... I wish I could hoard important meds.

[Riki]

I don't hoard meds, with the exception of painkillers, Tylenol 3, to be exact.  They work wonders for my migraines, but I have yet to find a doctor who will give me a regular prescription.  My grandmother, in the last year of her life, was on them for pain management.  When she died, there was a full bottle in her med cabinet.  I kept it.

[Simon Dog]

So I want to ask my doctors here for a prescription to be filled here for a hoarder's amount of immunosuppressives. We'll see.

"Hey doc, since you may modify my Tacro level, why not Rx me for 8 tablets a day instead of 4?  That way I'll be ready if you increase my dose.  I'll be sure to follow the instructions you give me and not those on the Rx bottle."

[Rerun]

Do I hoard Medication??   You bet your ass I do!!! 

[UkrainianTracksuit]

"Hey doc, since you may modify my Tacro level, why not Rx me for 8 tablets a day instead of 4?  That way I'll be ready if you increase my dose.  I'll be sure to follow the instructions you give me and not those on the Rx bottle."

While that sounds nice, I think my tightly wound-up tx surgeon (still see him for tac levels), might blow his bowels if I made such a suggestion! And since there are two teams of doctors following my medications, it sounds like a mix-up could happen. My team loves to do adjustments by 0.5 increments.

Like the times I ended up in hospital, they consult the integrated system system for prescription types and amount. I could say I took x amount per day and they would say, but the prescription says this, and would give the “official” amount before they got ahold of the doctor to straighten things out.

My husband reminded me that bringing in large amounts of prescription drugs brings added scrutiny... so I would hope the prescription matches what I take if I got pulled into questioning! 

Oh yes, I know what you’re saying Riki.

When they were trying to create a new dialysis access (somehow...), I was prescribed a lot of hydromorphone. I never used the full prescription so I kept it for things like awful period cramps.

I received some post-tx because the pancreatic side of the op hurt like a mofo. Kidney pain was nothing and gone soon. Pancreas... ouch.

Tylenol 3, or any of the “opiates” are so difficult to get long-standing prescriptions from doctors. It wasn’t always that way, as before the big OxyContin boom over a decade ago, it was easier to get for legitimate or long-standing reasons.

Then the government got in the process of more stringent auditing of any opioid prescriptions, and even things like benzos like Ativan, so doctors got waaaay more cautious. I only had a prescription once (not mentally ill but was going pretty crazy when it looked like my husband wasn’t going to get a work permit/visa). And having to sign a form when you go to pick them up... understandable, but ehhhh??? Why? 0 refills and only 10!

My grandfather had a prescription for basic extra strength Tylenol. He was a war veteran, elderly, on HD and in his last 2 years, cancer. Obviously, he had legitimate aches and pains. The nephrologist gave a prescription for a big supply with lots of refills.

Whoever is in charge of monitoring this in the provincial government said wth is this? What’s going on? So, the neph ended up doing some paperwork to say this was a long-term continuous thing. It’s funny though...they never asked about the Colasce! But in that case, I think it was more about money the province had to put out then the painkilling nature of stupid weak Tylenol.

While I completely understand the need to not hand out any painkillers like candy, and doctors covering their butts, simple things like refills should be considered according to the relationship to the patient (long term? compliant? is there a need?) I know there’s a directive that explains prescribing opioids for non-cancer chronic pain and it pretty much comes down to “use all sorts of alternatives first.” And then there the new regulations put in place last year...

But you’ve been doing the medical rodeo for a long time so you know all this!

[Charlie B53]

I hate to publicly admit to how many opiate pain meds the Wife and I have stashed.

We both hate them, the side effects, so we only use them if absolutely necessary and put the rest away.

I also have a large stash of a few antibiotics when they had been over prescribed.  One Intern must have misunderstood the residents orders, wrote me for an excessive large daily dose with a years refills.  I refilled it a couple times and stashed the bottles.

Expiration dates are an FDA requirement.  Most meds actual shelf life are much much longer as long as temp, moisture and light are controlled.

I suspect liquid meds to be far less 'storeable'.

[Simon Dog]

I think antibiotics are among the more likely drugs to actually expire, rather than expire by fiat.

I think my tightly wound-up tx surgeon (still see him for tac levels), might blow his bowels if I made such a suggestion! And since there are two teams of doctors following my medications, it sounds like a mix-up could happen. My team loves to do adjustments by 0.5 increments.

The instructions on the bottles of meds I was given post transplant bear little if any resemblance to the actual dose.  I was given 1mg prograf prescribed 4 BID, and a bottle of 5mg prograf for larger doses.   I have settled in on 1.5mg BID, so I not only get 4x the amount of 1mg  I actually need in a fill, but also got another Rx for .5mg.  The MD and pharmacist were very clear - ignore what is on the bottle and follow the printed instruction sheet I was given at discharge.

The Valcyte was prescribed 2 per day.  I started on 1 QOD and then up to one QD - still far less than actually precribed

In these cases, the extra was prescribed because the MD did not know my final actual dosage - but it still means either going much longer between fills or managing excess inventory.

Like the times I ended up in hospital, they consult the integrated system system for prescription types and amount. I could say I took x amount per day and they would say, but the prescription says this, and would give the “official” amount before they got ahold of the doctor to straighten things out.

That has not been my experience.     I have had no problems having hospitals and MDs take my word for what dosage and drugs I am taking.    A simple "That's wrong, my dose is ....." has always sufficed.  Maybe it's a US thing, or maybe it has to do with coming across like you know what you are talking about.

[UkrainianTracksuit]

Yeah, that’s totally not how my drugs are handed out. Then again, no bottles for me... not sure how many pills are in a bottle, but the boxes only have 50. For Myfortic, it’s a box of 120 360 mg tablets. That lasts 2 months. When the dose changed, a new prescription was provided to show the decrease and thus, left with one box at refill instead of two.

The prescriptions are printed out, “dispense 3 mgs daily for 90 days” for the tac. Pretty specific. Hence, that’s what slapped on the boxes when I pick them up. It’s not a vague number but the prescribed amount and dispensed for a 3 month supply. And my Valcyte, at two tabs per day, were counted out for a 3 month supply as well. No more, no less.

I guess the difference is that when I was sent home after over two months seeing my tx team twice a week, they knew my stable tac dose. The stable tac dose showed up after fluconazole stopped, since it has an interaction with tac. It hasn’t changed since then. And my Valcyte, since stopped, was the typical protocol for those with virus cross-matched patients. So... the prescription numbers are known and I get a three month supply. It’s been working fine until we thought about going to BFE Russia. Wouldn’t be concerned at all if they had the drugs somewhere in the oblast.

A part of me feels silly in asking for specialized prescriptions in regard to ambiguous doses. I’m one of numerous patients handled by the tx hospital: they have their protocol. One postdoctoral fellow compared the # of tx to taking tonsils out: we're not that special (numerically) after all. Obviously they know better than I do.

It’s not about taking one’s word about which prescriptions one takes. It’s the matter when there is an integrated system, consulted in large hospital networks, that list a patient’s prescriptions. So, if one is listed as x and patient says they take z, they want to know why there is a discrepancy. Who made the decision? When did it change?

For example, my local cardiologist did the simplest thing of changing a dose from whole once a day to half at twice a day. It was a verbal agreement and he forgot to write it down. So, at next appointment, the nurse pulled up my prescriptions and though the amount was the same, wanted to know why the dosing I told her was different because there was no record of it. I explained why, she believed me because I am a compliant patient and then made note in the files. I had a prescription change recently, with another doctor, to a weird number. Obviously, the health care provider believed me when I say, “I take x” but that also aligned with what the pill bottles say. O.K., no issues there.

It is best to stay with the official line because when too many hands stir the pot, you’ll have a mess, especially with telling one story of pills, and labeling showing another. When I was hospitalized in ICU for a fast-moving bacterial pneumonia and another time for suspected meningitis, I personally could not voice which prescriptions I took. So, while shoved in an ambulance, both times, with my prescriptions sitting on top of me, I better well have hoped the numbers matched the dose.

Not sure if the last line of the post was meant to come across as pompous or a general observation. Nevertheless, every medical professional I’ve dealt with in adulthood respect my opinion and feels I know what I’m talking about. Been doing this medical rodeo since birth... I advocate for myself when it is worth it, and defer to their intelligence other times.

[Simon Dog]

Integrated systems only go so far.

When I was admitted for one night because of post biopsy hematuria, the attending neph (not my regular doc) stopped by with his resident and asked "What do you take and what dose?".    They took careful notes, stated that "you seem to have a good handle on this", and then wrote orders based on the info I gave them.   And this was at the hospital where the TX was done.

Similarly, when I was admitted to a hospital that did not have records from my local MD, they asked what I took.  They based the dose off of what I told them.

As to boxes - I only occasionally get drugs in the "native packaging" from the manufacturer, and then only when the Rx exactly matches or exceeds the manufacturer's packaged amount.

But, none of the drugs I was asking for were scheduled drugs.

[UkrainianTracksuit]

I think anyone taking medications, if they are not a child, don’t have issues with mental cognition, hearing impaired or displaying senility, would be told, “they have a good handle on things.” Countless times, from age 6, when I could name off x prescription at x dose at x time I was told something similar. (And then looking for a nod from my parents.) It’s a very common compliment I think they hand out to make the patient feel empowered.

It’s different at my tx hospital. Everything is in their files and they consult the computer. They had my prescriptions on file from the assessment from 8 months prior and that made it easier for the doctors to slash and burn those no longer needed or adjust doses. I’ve had this with those in charge of my SPK, infectious disease, radiology and other departments (as needed). They pull up the prescriptions but also the transcriptions from the various appointments. For instance, it was a gynaecologist (trying to figure out appropriate birth control), that went into the network and read I had an abscess around my healed incision based on a radiology report prior to me seeing my tx doc.

But the point is that yes, you can tell a doctor you take x, but if there is a discrepancy, they’ll ask why. Obviously you’ll reply 1. How would they know if there’s a discrepancy upon which to base if they don’t know? There’s no system or no info! True. 2. Doctors take my word. Also true. But in the cases where 1 + 1 does not equal 2 and there is a reference point, they are going to ask. And subsequently, consult the official line, and why I can't ask for x amount to be dispensed when I only take z.

Health care systems vary internally within subnational regions, let alone in systems outside borders, so you’ll share experiences, I’ll share experiences and we’ll never stop. Your experiences are not correct nor better and neither are mine. It’s simply the organization of systems and it's rather myopic bouncing different personal experiences back and forth.

Now, obviously in my past life in Russia, where everything is behind, there isn’t an integrated system. (Side note: I’m part of a team integrating a less than developed former communist state into a more digital future in regard to commerce, etc. I don’t do the logistics of that, but crunch the numbers and cost. Anyway, they hope to have a digital integrated health system by 2025 so doctor in village A can have info readily available on a patient so that Doctor C can give better advice.)

They took my word but any doctor surely would not give me a random prescription amount. I traveled a lot for work, did dialysis, and they consulted the forms from my doctor, not only for set-up but for everyday prescriptions. And similarly when I consulted a private hospital in Dubai (infected bug bite), they didn’t know me from Adam, except the medical history sent over by my then neph, for dialysis, which the urgent care didn’t have. So they took my word on my prescriptions but I brought them along as further evidence. They appreciated jotting down what was on the bottles rather than me ramble off though.

[CatonTheRoof]

During these years there have been periods where my blood pressure starts spiking.  Either I drank too much in the last days,  ate hidden amounts or sodium,  or something else (anxiety)  caused the spike.   In those cases is when I generally take out some of my dossier to send the blood pressure down. 

I.E.  I'm on a protocol consisting of metoprolol, olmesartan, and clonidine.  This combination keeps my blood pressure fine,  but in case some weird thing happens, I might use in a temporal away additional verapamil  or captopril.   

This is why I have a small collection of BP medicine lol.

[kristina]

During these years there have been periods where my blood pressure starts spiking.  Either I drank too much in the last days,  ate hidden amounts or sodium,  or something else (anxiety)  caused the spike.   In those cases is when I generally take out some of my dossier to send the blood pressure down. 

I.E.  I'm on a protocol consisting of metoprolol, olmesartan, and clonidine.  This combination keeps my blood pressure fine,  but in case some weird thing happens, I might use in a temporal away additional verapamil  or captopril.   

This is why I have a small collection of BP medicine lol.

Hello Caton,
I also make sure that I always have enough blood pressure-medicines, just in case my BP behaves badly again and "jumps up" again during another undiagnosed SLE-flare-up. I have to regularly check-up my BP at home to make sure and to know what's going on with my BP. These precautions come about because "in the old days" I did not know anything about it and because the SLE (Systemic Lupus Erythematosus) was not yet diagnosed,  I suffered SLE-flare-ups during which my BP went into "unknown spheres" to cause me in the process two life-dangerous cerebral haemorrhages (necessitating two life-dangerous operations at the time) and ten years later I suffered a very serious and devastating stroke, which took me many years to recover from ... Ever since then I make absolutely sure about my blood pressure and also make sure I always have more than enough BP-medications, in case I need more medication to get my BP under reasonable control again during a flare-up and these precautions have worked well ever since, touch wood and hopefully it continues in that way...

[CatonTheRoof]

Hello Kristina,  I remember reading your stories during many years around here.   I have come and gone over here in the years I have had the kidney failure.  I disappear for long periods usually,  I don't even do it un purpose, I simply guess that I try to keep my mind distracted from this stumbling block-   I really believe medicine is advancing fast and in the upcoming decade all of these will be greatly surpassed or at the very least, drastically improved.

Please take care of yourself!  I'm glad to hear that your blood pressure is a bit more stable now.   Could you tell me why was your lupus undiscovered for so long?

One of the things that many times has sent my blood pressure through the roof is the famous "flight or fight mode"  This kind of anxiety was being triggered mostly during the evening by a very specific online game.   Ever since I stopped that game, Blood Pressure remains much better, isn't it weird?      I'm on relaxation techniques currently.   I had OCD onset upon developing my kidney failure (appareantly both things are connected)   gladly it has greatly diminished through relaxation and exercise, but still,  anxiety might always be around the corner... for everyone!  so one has to look out.

[kristina]

Hello Kristina,  I remember reading your stories during many years around here.   I have come and gone over here in the years I have had the kidney failure.  I disappear for long periods usually,  I don't even do it un purpose, I simply guess that I try to keep my mind distracted from this stumbling block-   I really believe medicine is advancing fast and in the upcoming decade all of these will be greatly surpassed or at the very least, drastically improved.

Please take care of yourself!  I'm glad to hear that your blood pressure is a bit more stable now.   Could you tell me why was your lupus undiscovered for so long?

One of the things that many times has sent my blood pressure through the roof is the famous "flight or fight mode"  This kind of anxiety was being triggered mostly during the evening by a very specific online game.   Ever since I stopped that game, Blood Pressure remains much better, isn't it weird?      I'm on relaxation techniques currently.   I had OCD onset upon developing my kidney failure (appareantly both things are connected)   gladly it has greatly diminished through relaxation and exercise, but still,  anxiety might always be around the corner... for everyone!  so one has to look out.

Hello again, Caton,
The reason why "my" Systemic Lupus (SLE) remained so long not diagnosed is, because I suffer from a very rare form and very rare symptoms of SLE with many other rare components of similar diseases, which are all genetically inherited ... and since in "my family" there was not one person who suffered anywhere near from any of these symptoms, it was medically assumed. that I could not possibly suffer from this very rare genetically inherited "version" of MCTD/SLE/Vasculitis etc and another few other very rare components.
It was only in 1995 that my husband and I found out (after my diagnosis) that "my family" was not my genetic family at all and that I was taken on by them as a baby, after my genetic mother died shortly after my birth (obviously because of a flare-up of MCTD/Systemic Lupus, which is generally called the "Lady-Killer", because it kills so many females during a flare-up, after they have given birth.) The family, who I thought was my genetic family took me on because they hoped and counted on financial gains by taking me on and they instantly registered me in their own name for financial gain later on (no idea how they could manage this, but, as my husband and I found out, in those days people still took people's word for it.) Since my mother originated from a rich "old" family from pre-revolutionary "Old Russia" who fled just in time, the people who took me on counted on financial gain by taking me on and registering me in their name, they miscalculated very badly, because my mother was not married and her family took this fact very badly and could not accept it. Furthermore, I was at that time already registered with the family who took me on in hope of financial gain. Just imagine, when they registered me in their name, they named a special hospital where I was supposed to be born, but when my husband and I researched in the archives there, we found out, that I certainly was not born there, because there was no documented evidence for my birth there and there existed only one more hospital there where I could have really been born, but unfortunately that was a private hospital and it was closed in the late eighties and all documents of births etc. in that hospital were destroyed with all the other papers. Talk about bad luck ... and that is the reason, why our research had to stop there, because we had no other leads to go on and the family who took me on would not speak to us and they also blamed me for their, as they saw it, bad luck and terrible miscalculations ...

[Mr Ken]

Ever go to pick up your prescription but they can't give it to you because their computer system is down? And then a 1 day wait turns into 2 days? My husband is pretty good at getting his meds refilled before he runs out of one but the pharmacy's system was down and it made me wonder -should people hoard meds? I am wondering if we should put away a few at a time in case he can't get a refill in time. Of course, we'd have to keep track of dosage and expiration dates but this might be worth doing. Perhaps this is something people have been doing for a long time and we are just late to the table.

Reorder when you have 5 day supply left instead of waiting until the last minute. The pharmacy usually gives you at least one week over lapping of prescription refills. If you are a transplant you cannot miss a day so be careful...