Ch-ch-ch-Changes

For nearly a year now, I’ve been injecting Enbrel weekly.  It was pretty scary in the beginning, but I like Enbrel.  I like how it makes me feel so much better.  I like how easy it is to use.  I like the once-a-week schedule so that it’s easy to remember and incorporate into a routine.  I like that it works.

My inflammatory markers look good.  Ten years ago, my response to the meds would be considered a success story.  Now, my rheumatologist tells me, the standards are higher.  She’s treating me, not my lab reports, and thinks I might do better on Humira.  I shouldn’t have new bursitis, I shouldn’t have enthesitis, my feet shouldn’t hurt all the time if these meds were doing their job 100%.  So, effective immediately, I’ve moved on to my second biologic.

I just got off the phone from trying to activate my new Humira card.  All the literature – yes, I actually read this stuff – says that the card is good for twelve months.

  • “This card is valid for 12 months from the date of first use, after which the patient has the option to reenroll (sic) in the program.”
  • “The program pays:  Months 1-12: Up to $500 each month”
  • “Easy to renew after 12 months”

After providing all my information, the voice on the other end of the phone concluded the conversation by saying that this card is good for twelve fills.

“No, you mean twelve months, right?  That’s what your literature says.” 

We went back and forth, her insisting that it’s only good for twelve fills, and me wondering why they won’t cover that last fill of the year when their written materials say that they’ll help out for a full twelve months.

A Humira prescription gets me a box of two injections to be given every-other-week, which should make one box last four weeks.  Divide fifty-two weeks of the year by four weeks per box, and it’s obvious that it takes thirteen fills to get through a year.  This is basic math that my eight-year-old understands; it should not be an impossible concept for an adult to grasp.

Some people will point out that I should be grateful that they’re picking up a portion of the cost.  And I am.  Really.  Extremely grateful.  I just happen to think it’s deceitful to tell people that the card is good for a year if it isn’t. (/rant)

I got my first Humira injection today.  I now have a headache – my first in over a year.  I hope that’s bad coincidental timing, and not a problem that I’ll have with the new med.  Since I’d heard that Humira stings much more than Enbrel, I was a bit concerned.  That turned out not to be true – at least for me.  It was about the same.  With any luck, that will continue.

And now, given that it’s only a week until Christmas, I should probably start my Christmas shopping.
Or baking.  Or packing for our trip.
Have a Merry Christmas!

Traveling With Enbrel

What a challenge to need refrigerated medicine when you don’t have a refrigerator!  When I first started Enbrel, one of my scheduling considerations was finding an injection day/time that would minimize the need to travel with my weekly shot.  The perfect solution for me has been mid-week injections.  I don’t travel often, and when I do it’s usually a long weekend.  By avoiding Friday-Monday as the day to take my weekly medications, those rare excursions away from home have been easy.

Until now.  We just got home from a family vacation — a 5000 mile road trip.  Fortunately, I already had a medication travel kit because I requested one when my Enbrel was first prescribed.

My travel kit came with a lunch-box sized insulated bag, an ice pack that zips into a pocket in the bag, a small sharps container that also fits into the bag, and another bag full of alcohol wipes.  It was pretty nice to have everything I needed all together in a tidy little package.

There were a few glitches on our trip.

  • Always make sure the hotel room’s refrigerator is plugged in and working if you’re going to rely on it to keep things cold for you.
  • The fact that six hotels had a refrigerator in every room is no guarantee that the seventh hotel will have a refrigerator.  Ask before checking in.
  • If it’s necessary to place medication in the hotel’s commercial refrigerator, use whatever excuse is needed to do it yourself.  I had one hotel clerk think that if there was an ice pack in my bag, he could save himself five seconds of work by placing the entire travel bag into the freezer instead of just the ice pack in the freezer and the rest of my stuff in the ‘fridge.  Lucky for me, he said, “I’ll just put the whole thing in the freezer for you” After a brief moment of panic, I convinced him to let me do the job myself.

And the big one:

  • Refrigerator temperatures vary widely.  Some refrigerators are cold enough to freeze things.  Great if you have a bottle of water to keep cold all day in a hot car.  Not so good to remove your Enbrel from the refrigerator and discover that it is frozen solid.

Yes.  Saturday morning my Enbrel was frozen.

To say that I was not happy is an understatement.

Frantic

I contacted Enbrel Support and was informed that Enbrel should not be frozen.  I don’t often cuss, but I surely was tempted.  I didn’t try to freeze it.  All I did was stick it in the room’s refrigerator – which turned out to be extra cold!

I was then asked if I had a thermometer to check the temperature of the refrigerator.  Are you kidding me?  Who would pack a refrigerator thermometer in their vacation luggage?

Eventually the nurse read me what sounded like a prepared legal statement:  there is data to suggest that Enbrel that was frozen briefly in a household freezer (not a commercial freezer) can still be used after it thaws (just don’t do anything stupid like soaking it in warm water or putting it in the microwave).  Apparently people who are stupid enough to think that a refrigerator is a safe place to store refrigerated medication need to be warned not to microwave that medicine.

Who’s On First

Enbrel Support:  It should be okay, but contact your doctor.

Doctor’s Office:  Definitely not okay; contact Enbrel.

My doctor’s office, when I finally phoned, sounded every bit as concerned as I’d felt when I first discovered the frozen box.  They said, NO.  In no uncertain terms, the nurse said it would not be safe.  I should not use the frozen med and she offered me one of their samples.  Apparently the nurse only got the “frozen” part of the message, and not the “on vacation” part.  We talked some more, and eventually she said that she only knows what Enbrel tells her.  If they said it would be okay, I could go ahead and try it.

I can confirm what the support nurse said:  it doesn’t last as long, but it did work.

Next Time

I am now investigating the Frio that Helen recommended, and will report back.  It sounds like a better solution than the ice pack I used, and would have avoided the refrigerator/freezer issues entirely.

Energy

I love Enbrel!  It gives me so much more energy, and practically no morning stiffness (five minutes, tops).  I feel like I have my life back.

After having zero energy, scraping by on the bare minimum of all the tasks I should be accomplishing, getting so frustrated at how little gets done, things are looking up.  Last week my house actually got cleaned.  Saturday morning I cleaned out the refrigerator, changed the bedding on my youngest boys beds (why is that such a difficult task?), washed an extra six loads of laundry, gave the boys all a haircut, started to plan our upcoming vacation…

Now, if you don’t have RA, that might sound kinda busy, but pretty ordinary.  If you have RA and are familiar with the bone-crushing fatigue that overwhelms every waking moment, you know how truly spectacular a day like that is.

Monday Mr. WarmSocks took the day off work and we took the entire family to Seattle.  The kids got to see where we used to live.  We visited Greenlake and ate at Spuds.  Did you know there are biodegradable “plastic” cups/spoons made from corn?  Then we headed across the lake and toured Microsoft’s visitor’s center.

About the visitor’s center – I found what I want for my new coffee table:

Unfortunately, it is way out of my price range.  The Microsoft Surface sure is cool, though.  Two of my kids played chess on it much like you would on a 3D chess board – touch the screen and point where you want to move your piece – but there’s nothing to get bumped or knocked over, and no pieces to lose, nothing to have to clean up when you’re done.  There are other games, awesome maps, photos…  You can simply set your digital camera down on the surface and your photos will be downloaded, then you can look at your pictures just as if you were shuffling through a stack of prints, scatter them across the tabletop, etc. It was lots of fun.  And since this isn’t an ad for them, I’ll stop there.

The point is that we had a fun, full day.  Two long car trips, lots of walking around, and before Enbrel I don’t know if it would have been possible.  Especially after such a busy day Saturday.  Just a small portion of Saturday’s activities would have put me flat on my back for a few days, but I barely noticed it at all and was able to go out and do stuff Sunday and Monday, too.  Today we have violin lessons, and my boys have scouts tonight, then tomorrow we’ll hit the library.  I actually have the energy to do all this stuff!