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.

A Change of Perspective

In the past two weeks, I’ve changed my mind about snuggling with sick kids.  I don’t want to be sick, so we don’t share silverware, we wash our hands frequently, and people sometimes remember to cover their mouths when they cough.  Despite the care I took to not catch my kids’ bug, I ended up with a miserable cold.  All my precautions were for naught.

That led me to re-think my stance.  Nobody wants to be nagged.  I want my home to be a pleasant place to live.  For the most part, I think it is – except for infection control – when I turn into a different person.  If I’m going to get sick regardless of what I do, the least I can do is make the circumstances as pleasant as possible.

As I’ve sat here coughing my lungs out, I realized that people don’t always recover.  The biologics have a warning on them stating explicitly that sometimes people die from infections contracted while taking these medications.  If, at some point, I don’t recover, I don’t want whichever kid gave me those germs to forever feel guilty about it.  That is what would happen with normal kids, and while I happen to be biased and think that my kids are extraordinary people, I recognize that they’re very normal people with normal feelings.  It would be awful for them to go the rest of their lives thinking that my getting sick and dying was their fault.

In my house, things will be different.  Infection control will now be taught when people are healthy, not sick, so that when the next round hits, everyone understands how to minimize the spread of germs.  One tool we’ll be using is the Henry The Hand website (thanks, Dr. S.), and I’ll come up with some other ideas, too.

And I’ll gladly enjoy every chance I have to hold my kids, regardless of whether they’re sick or healthy.

Next!

This time last year, I felt great.  It was wonderful to finally feel good again. 

Things fell apart when I tried to reduce my number of meds.  Discontinuing ssz was a huge mistake, so I added it back in.  Next I discontinued the hcq.  The difference wasn’t as dramatic as it had been with ssz, but it definitely made a difference.  Sometimes I wonder if we should have just added it back instead of switching to biologic #2.

After a year spent singing the praises of Enbrel, I’ve been fairly silent about my second biologic.  Reason being, it didn’t work.  It’s a med that works very well for many people, so I don’t want to denigrate it unfairly.  In my treatment plan, though, it’s history.

Given my druthers, my rheumatologist would have written prescriptions to return to what was working a year ago.  She, obviously, knows all sorts of things I don’t, and thought it better to try a different biologic (maybe because just a couple months ago she had to argue with my insurer that biologic #1 wasn’t working).

I’ve now received my first dose of Cimzia of the cool looking syringe.  I’ll post a picture if my insurance company ever gets around to processing my pre-auth.  They took their own sweet time with the last one, and it drives me crazy that think they know better than my doctor what treatment is appropriate. (/rant)

I feel better already — likely due to the 20mg prednisone that I’ll have the pleasure of tapering off in a couple months.  On the plus side, there’s no need to finance a steroid injection in my shoulder.  The pred has already helped dramatically.

I have no desire to work my way through every single biologic on the market.  Let’s hope this one works better than the last.