Refractory RA Arthritic Chick’s kind of inflammatory arthritisMy RA hasn’t responded well to any of the medications I’ve tried. And I’ve tried a lot of them!  In several combinations.  Tweaking here and there, recycling the same drugs over and over.  Wishful maybe?  Rearranging deck chairs on the Titanic?  Maybe…

I thought I was a rare case.  I’ve seen a few rheumatologists and they all seem shocked that I just don’t respond very well. My first rheumatologist said I was his only patient that he hadn’t gotten into remission. This was at the four year mark.  He was starting to think it wasn’t even inflammatory arthritis.  Then a bone scan and some ultrasounds proved it was.  He was stumped.

My second rheumatologist is similar. She has been much more aggressive in her treatment.  In a few weeks I will start my third biological, Orencia, having failed both Enbrel and Humira.

You would think that everyone responds.  But I’ve been doing some reading, and its well documented that 20-40 percent of people DO NOT even achieve ACR 20 (a 20% improvement in symptoms). There’s even a name for my kind of RA.

Refractory RA.

So why are they so surprised? I’m not rare. I’m not unusual.  I wish I were.  There are legions of us, fighting, hoping.  Living our lives in a continual cycle of trying to find ‘the one’.  The drug combo that gives us our lives back.

This is how it works…

You try a new drug, full of hope.

You apply. You wait for it to be approved.  You take it for the first time, actively NOT thinking about the side effects your rheumy was obliged to explain to you. And then you wait.  For good things to happen.  Sometimes bad things happen. Sometimes nothing happens.

As time goes on it becomes apparent that this drug is not working either.  If it’s not causing terrible side effects, you persevere. You wait. You keep hoping.  If it IS causing bad side effects it’s a battle.  Try to overcome the side effects.  Try to persevere. Try to ignore the fact that things are getting worse. You tell yourself that sometimes things have to get worse before they get better. That it’s always darkest before dawn. And any number of other clichés and platitudes.  Whatever gets you through the night.

But then there comes a day where you have had enough.  You realize the downward slide of your umpteenth prednisone taper has become endless days filled with pain and fatigue on the couch.  Life has become nothing but pain and perseverance.

You can paint a smile on your face, but you can’t enjoy it.  You can’t feel it. There’s no happiness. There’s no joy.

So you give in.  You demand your rheumy change you to the next drug.

But that comes at a cost. Another treatment option down. Another step closer to NO more treatment options.

And with no more treatment options, then this would be your life, forever.  You would have to find a way to accept that.  With no hope.

But you brush that thought aside. You have to.  You have to stay positive.

So rheumy tells you about the next drug and why she is prescribing it.  You tell yourself it will work.

You try a new drug.  Full of hope…