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.

Injectable Methotrexate

It’s great having few side effects from methotrexate.  I recall how nervous I was about starting this medication, and how sick I was the first couple weeks (despite a low dose).  Thanks to AF’s RA support board, I’d already known that side effects can be minimized by taking pills at bedtime (which lets you sleep through the majority of the nausea).  It was great to discover first-hand that it’s true when they say that side-effects diminish over time – your body gets used to the med and it doesn’t continue to make you sick.  What a relief!

I started taking methotrexate as tablets.  My starting dose was four pills (10 mg).  Then I increased to six pills (15 mg), then to eight (20 mg).  Now my rheumatologist has again increased the dose and also switched me to injectable.  25 mg equals 1 cc in the syringe.

I thought, being experienced with the injectable biologics, that injectable mtx would be the same.  It’s not.

Injectable mtx is stable at room temperature, so it can be kept in the cupboard, unlike biologics that need to be stored in the refrigerator.  Since my refrigerator always seems to have way too much stuff in it, it’s nice to keep the mtx in my cupboard.  A bonus benefit is that this should make the mtx easier to take along on trips, should the need ever arise.

Unlike the huge space-eating boxes that biologics come in, the vials of mtx are small.  Two of the 2 ml vials fit into a regular sized prescription bottle.  Even the 10 ml vial is about the size of a standard prescription bottle.

A large part of the difference is that my biologics have all come in pre-filled syringes with an attached hypodermic needle.  I open the box, remove the medicine, let it warm up briefly, then give the shot.  It’s quite simple.  In contrast, injectable mtx comes in a little vial with separate syringes/needles, and I have to draw it up myself.  It’s not difficult.  My pharmacist was kind enough to give me a demonstration and then let me practice (with a vial of plain water) instead of sending me home to figure it out on my own.

Appearance of the medication is different, too, and I think this is where I’m running into problems.  My biologics have all been clear, looking a bit like water:  familiar, harmless.  Injectable mtx, on the other hand, is bright yellow.  BRIGHT YELLOW!!!  Really, I’m supposed to put that in my body?!  I’m having a little trouble wrapping my head around this one.

In some ways, the injections are even easier than the pills.  Pills are supposed to be taken on an empty stomach, but injections can be done any time of day, without regard to when you last ate.

I also read somewhere (sorry, no link), that sometimes injecting a medicine (bypassing the stomach) can make it easier on your liver.  My liver needs to last many years yet, so I’m in favor of making things easier on it.

Another advantage is that bypassing the stomach is supposed to make the medication more effective.  Who could object to that?

I’m open to tips if anyone has ideas on getting past the concept of injecting that bright yellow stuff into my stomach.

Thank you for reading.

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 *With needles, a bigger number means a smaller needle diameter.  A 27 gauge needle is 0.01625 inches (0.4128 mm).  A 25 gauge needle is 0.02025 inches (0.5144 mm).  Not a huge difference, but definitely noticeable when that thing is poking through your skin!

Dalmatian Days

Despite those wonderful television commercials showing people dancing and climbing mountains, biologics don’t always have such wonderful results.  It appears that my third biologic is failing.  I have not failed treatment; it is the medication that doesn’t work.

With Enbrel, I felt great.  The day before I was due for a shot, I could tell it was wearing off, but I still felt pretty good.  Unfortunately, it gradually became less effective and my doctor decided to try a different biologic.  Not one to object to feeling better, I thought it sounded like a good idea.

Humira never worked for me, though.  Never.  I really wished I’d stuck with Enbrel and asked if I could return to it.

Nothing doing.  We moved to a third biologic.  Cimzia has definitely been better than Humira, but not lived up to the high expectations I had due to the Enbrel.  I improve dramatically with every injection, but the med gradually wears off.  Lately I haven’t been getting as much benefit as I used to, and am feeling pretty crummy before it’s time for the next shot.

Of course I’ve also been tapering off prednisone, so maybe the Cimzia was never as beneficial as it seemed.

The red hot swelling so characteristic of RA hasn’t made an appearance in a long time, but my connective tissues are a different story.  Before all this started I never would have believed that someone could have tendonitis or bursitis simultaneously in so many places.

Did you ever watch the movie 101 Dalmatians?  There’s one part where one of the puppies whines, “My nose is cold, and my ears is cold, and my tail is cold, and I’m hungry.”  In the movie, it’s cute.  If I were to whine, it wouldn’t be cute, but there are days I call “dalmatian days,” where I just want to join that little puppy in whimpering, “My hands ache, and my feet ache, and my wrists hurt, and my spine hurts, and I have tendonitis in my shoulders, elbows, thumbs, knees, and Achilles tendons; I have bursitis in my hips AND did you know you can get bursitis so that it hurts to sit down, too?!”

Dalmatian days.  I seriously considered buying a cane Monday.  It didn’t happen – mainly because that would have involved climbing stairs (difficult) to get my money, then back downstairs again (ouch), hobbling to the car (no), and making my way across a large parking lot and into a store (not a chance).  Instead, I sat and played games with my kids. Cribbage, Yahtzee, and Farkle are fun ways to reinforce kids arithmetic skills and take mom’s mind off other things.

I can’t play games all the time, though.  What I would like to do is return to Enbrel.  Even if it doesn’t work as well as when I first started it, it might work better than Humira or Cimzia.  If it didn’t, at least then I’d know.  If this were all cash-only, no prescriptions or insurance involved, that’s what I’d do.  My doctor won’t let me return to Enbrel, though.  She says the next step is moving away from the TNF inhibitors and switching to an infusion.  I don’t want to do that.  Cost is one factor, but not the main one.  It’s fear.  The idea of an infusion scares me spitless.

My plan is to pull out all my old exercise sheets from my physical therapist and resume those exercises.  That should help with the hips, shoulders, and Achilles tendons, and get me feeling enough better that I can walk through my kitchen without people asking, “What did you do?”  I’m then (in theory) going to come up with an exercise routine.  One that works for me, not one of those body-builder routines, nor one of those in-training-to-run-a-marathon routines.  I just need a basic attempt-to-be-reasonably-healthy exercise routine.  After that, I’ll evaluate my progress and figure out the next step.  And I really hope the next step isn’t spending any days in an infusion center.

Wishing you no dalmatian days.