Patient Perspective on Refills

Med renewal appointments are supposed to be quick.  How hard can it be to verify that everything is okay, then write a new prescription?

Although I’d love to have my pharmacy fax my doctor about my prescriptions, doctors want to periodically examine the patient before authorizing more refills.  It doesn’t take very long reading medblogs to realize that there’s a reason my doctor won’t okay refills over the phone (or fax).  Maybe something has changed and the dose needs to be tweaked.  Maybe the medicine isn’t effective, so a different one needs to be tried.  Medblogs are great for learning the reasons that doctors offices do some of the things they do.

It’s one thing to read about it in theory, it’s another to experience it.

At a recent appointment, I asked for a renewal on two prescriptions.  Simple, straightforward.  That was the whole purpose of the appointment; I figured it would take five minutes.

One medicine is a headache prophylactic that I’ve taken for three years.  As usual, my doctor asked about headaches.  Normally I say there have been none, then he writes the renewal.  This time, however, I mentioned that I’d been having headaches, but figured out that it was due to the muscle relaxant I’d been taking.  I quit taking it, and have had no headaches since then.

While this was good news in obtaining a renewal on that med, it threw a wrench in the works for the other medicine that I wanted more of.

That second medicine was to treat a rash.  That rash was thought to be from a medication interaction.  If you start taking a new medication and subsequently develop a rash, then it makes sense that the med might have caused the rash (especially when it’s listed as one of the med’s possible side effects).  It also makes sense that discontinuing that med would make the rash go away.  If you discontinue the med, but the rash continues to get worse, then maybe the rash was caused by something else.

I knew that, but I don’t care.   I don’t care what the rash is.  I don’t want to know.  I don’t want to go to more doctor’s appointments.  I don’t want to have more tests.  I don’t want to incur more expense.  I don’t want another diagnosis.  I am done!  All I wanted was for my doctor to write a prescription so I could refill my meds (so that I can have little round scars on my legs instead of ugly bleeding sores).

Apparently, good doctors care what a rash is, even when the patient would rather not know.  I don’t want to go to more doctor’s appointments – but I have a referral and the appointment is already scheduled.  I don’t want to have more tests – but the doctor will probably want to run some.  I don’t want to incur more medical expenses - but all of this is going to cost money.  I don’t want another diagnosis - but it looks like I’ll walk out of there with one anyway.

Last week I checked in at my FP‘s office expecting my doctor to renew two prescriptions in a very quick appointment.  He did write those prescriptions, but that half-hour appointment wasn’t quick.  This is incredibly frustrating.  Request for med renewals aren’t supposed to be snowball appointments.

Abbreviating Med Lists

People who regularly take medicine should know what we’re taking.  To me, this seems obvious, but there are always those who need everything stated explicitly.  People taking prescriptions, vitamins, herbs, and any other treatments should know what’s being taken and why.

It’s pretty easy to make yourself a list and stick it in your wallet so that it’s always available.  If you need medical assistance (for instance, if you’re in a car wreck, or if you suddenly get sick and are taken to the emergency room), it’s great to have that list ready to hand the medics or emergency physician.

In the beginning, my list was the basic:

I thought it was efficient to adopt standard medical abbreviations.  I’ve discovered, however, that certain assumptions accompany those abbreviations.  There are 24 hours in a day, and it makes no sense to me that “qd” means “every day” but is assumed to be “every morning.” I’m told that it does.  Why that is, nobody has explained.  One doctor told me that if you choose to take a medicine in the evening, you’d abbreviate that q pm.  Given the similarity between the way “r” and “n” run together when typed, I’d be inclined to use capital letters to avoid any chance of confusing prn/pm.

Do people ever misinterpret your meds list?  In an attempt to remove the ambiguity, I now write, “with dinner” instead of “qd” since my once-a-day prescriptions are taken with my evening meal.  I suppose, if I were travelling, I’d change that to “with supper” to avoid confusion in those parts of the country where dinner is eaten at noon.

I also added a column explaining the purpose of the medicine, and another column indicating whether the medicine is by-mouth (po), subcutaneous (sq), or a topical ointment (ung).

I discovered a great bonus to taking once-a-day medicines with supper instead of with breakfast.  Some medical procedures require fasting.  Doctors try to balance their need for you to have an empty stomach with their desire for you to take your medications as prescribed.  If they don’t know what time of day you take your prescriptions, instructions end up being the equivalent of, “Nothing to eat or drink after midnight because it’s very important that you have an empty stomach, except you should take your dinner-time meds with a tiny sip of water at breakfast-time.”

Abbreviations are great when everyone agrees on what they mean.  With med lists, I suspect we’re better off being as clear as possible.

Methotrexate in the Hospital

The young woman who’d so cheerfully introduced herself as my nurse when I was admitted to the hospital returned to my room about ten minutes later.  Now looking afraid, she stopped hesitantly only a few steps into the room and explained that there would be a different nurse assigned to me since she was expecting a baby and I was taking methotrexate.

Methotrexate, unlike tons of other prescription medications, comes with a black box warning.  Patients are told to be careful to avoid infections because one could be deadly, and are given a host of other instructions.  There are apparently some things they never tell us about this medication, though.

More than once I heard people talking at my door stop as they were about to enter, then one would tell the other, “Uh-oh.  Someone else will have to take this room.”  Apparently people taking methotrexate are worse than lepers.

Later I discovered that my hospital room had this sign on the door:

Part of me thought, “This is ridiculous.  It’s not like I’m exuding the stuff through my skin.”  Another part of me wondered why they were so concerned about methotrexate, but not about Cimzia.

It turns out that although methotrexate doesn’t ooze out the pores, it can be found in bodily fluids for 72 hours after a dose is given.  Since medical people deal with blood, vomit, urine, and the like, they really do have to be careful when patients are taking methotrexate.

Had I known that, I might have been able to alert people from the very beginning:  “I’m taking mtx; please make sure my caregivers are people who aren’t trying to have a baby.”

Women expecting a baby try to do everything possible to have a healthy baby.  Seeing the look on that poor nurse’s face, I imagine she was beside herself.  She looked to be about eight months along, and spending the next month worrying what she might have done to her baby couldn’t be good for either of them.  It wasn’t until a few days later that I learned what the concern with mtx is, and I asked my nurse if she could track the other nurse down and let her know that my last injection was beyond the 72 hours, so she and her baby were in the clear.

That should never have happened.  Had I known that it was an issue, I would have told them from the start.  Wouldn’t we all do that?  Shouldn’t we all do that?

A stranger’s baby shouldn’t suffer birth defects due to the medicines I’m taking.

I’m adding a note to my cell phone (where I keep my meds list):  Cytotoxic agents.  If there’s ever a next time, that information will be among the first provided.