The party’s over….or at least on hiatus

Well, it’s been two years since Caitlin had her last infusion of Actemra.  Two years since she took her last dose of methotrexate.   Two great years of remission – of vacation from almost everything we lived with her systemic juvenile arthritis.  It’s been blissful – a blessing I have tried never to take for granted.  But now, it looks like we’ll be taking a little break from our break.  A lull in the party so to speak.

She started having problems about six weeks ago.  But with school starting, and her being in Dance (the first physical education class she has had in three years) – I figured there were plenty of reasons for fatigue and swelling.  Activity induced, we hoped.  Ice, rest and over the counter anti-inflammatories- we assured ourselves – would keep us in the beautiful land of remission.  A trip to the rheumy then revealed swelling in fingers, wrists, elbows, one knee, both ankles…. The labs were slightly elevated.  Nothing to be alarmed over.  We opted for one quick pulse of prednisone hoping to get back to shore, back to the balmy, calm land of remission.

A week after the pred pulse (which is another story on its own.  Let’s just say that normal 15-year-old girlitude + pred = not very pleasant) – she was already having problems again.  I tried to stay positive – and keep her positive.  I guess that was interpreted as my refusal to believe that her arthritis was coming back, because I overheard her tell my friend,  “I’d be better if somebody would let me get back on the medication I need.”  Yeah!  That’s me!  The one who never seeks treatment for this poor girl!  Right. Second pred pulse 21 days after the first finished and then, back to the rheumy.

It’s been a long time coming – this transition period where I learn to keep my mouth shut, and let this soon-to-be woman have her own discussions about her own health.  I’m not very good at shutting up – and she is not always good at verbalizing.  More often than not – she stares blankly at the doctor’s question, and then stares at me with a “well, what are you waiting for?” look. I am amazed at how much she does not remember.  Sometimes, I think she would forget that she has titanium hips if we didn’t talk about it.   Not this time.

The labs are worse.  Nothing to get crazy about – but still, not going the right direction.  They certainly should have been better five days after finishing 90 mg of pred for five days straight.  The joints also have not improved much.  She explained the morning stiffness (3 hours?  I didn’t know…) and the fact that even on the pred, she was still in pain. “I need to be better.  I need to be able to get up off the floor in dance.  Some of my classes are upstairs.  I’m having problems holding pencils….” – she poured out the details of her days.

He suggested Actemra again.  No infusions, she said.  Unless the clinic is open in the evening or on the weekends, she’s not willing to miss school.  Well, he suggested… it’s been so long since she was on a TNF drug.  She is almost more poly now than systemic – no fevers, rashes or organ involvement.  Maybe she would respond to one of those?  OK, she said.  As long as it is injections at home.  Then, a discussion about Enbrel vs. Humira.  Still, I said nothing, knowing full well she does not remember either of those.  She was only four when she took Enbrel- and it was the only biologic on the market.  She was nine when she last took Humira – and does not remember hiding in the closet, screaming because she hated the way it burned.  She doesn’t remember that her baby brother hid under the kitchen table because it scared him so much to see her scream and cry.  She doesn’t remember.  But I do.  I said nothing.

Four choices, he said.

First choice – do nothing.  Not an option – she interjected.

Second choice – Humira alone.

Third choice – Humira with methotrexate. The mtx will take several months to get up to speed, but maybe we’ll be able to spread the Humira out again and wean down to just the mtx.

Fourth choice- another pulse of pred and hope for the best.  No way, she said.

So, option 3 is it.  That’s what she chose.  Methotrexate – oral for now and Humira, every other week.  The nurse quickly wrote the necessary prescriptions and warned me that this could take several weeks. I already got her a TB test last week, because I had a feeling that this might happen…. but it might take a while for insurance to approve and our pharmacy to ship.

“What am I supposed to do in the meantime?” she asked. Then a discussion about all of the pain meds she has taken followed, from ultram to vicodin – and ultimately, she decided she can wait. “I feel like my head is cloudy enough with all my classes as it is!”  Ha, ha.

As we drove home, I had the strangest emotions.  Given the fact that I was always told this day would come – I guess I am not terribly surprised.  But… I was gifted with a perspective this week that softens this transition so much, it barely touches us.  There was a lovely young girl, 12 years old – who passed away last week from complications from forms of arthritis.  Her disease was referred to as overlap syndrome – and I know she had many rare complications- I believe Scleroderma may have been involved as well.  I attended the rosary service for this young beauty – and felt keenly what the loss of her life means to her family and friends.  I have thought of them all week.

We are all entitled to our own response to our own situation.  Just because somebody else has it worse, does not mean we are not entitled to be bummed out about our own deal.  That being said… I have spent so many moments this week being grateful for the lives of my children – the idea of getting back on the arthritis roller coaster just didn’t hit me as hard as it might have two weeks ago.  Or maybe two weeks from now.  Who knows?

Maybe too… the idea of these injections don’t seem as horrifying with my 15-year-old daughter – who has already weathered so much more – as they seemed with those pudgy little five-year old legs.  I’m guessing she won’t want Princess bandaids this time around!  It used to be one of the few things she could control was the band aid…and which leg.

Instead of feeling the things I thought I would feel (ie: anger, frustration, depression) – I just sort of feel like when it’s the Sunday night of vacation and you all of a sudden remember the things you meant to do.  How you meant to clean out the closet, or read that book, or get the oil changed or whatever… the things that you can’t quite manage to fit in to your everyday life.  Except, it’s too late now. I sort of feel like that.  I’m not sure what it was we didn’t manage to do…. it just feels like something.

Maybe what I should call it is Denial.  Because honestly – I don’t believe this will be a long break from our break.

And actually – the whole appointment where Caitlin spoke up, and made her own decision – and was clear, definitive and decisive – HUGE Victory!

Even more – the process of getting our hands on this medication has been so smooth, I almost feel guilty for my good luck.  Our appointment was Wednesday…. and the nurse warned me.  At least two weeks she said. But then she called Thursday morning – to tell me that the prescription had already been approved by insurance and forwarded to Caremark, my online/mail pharmacy.  Thursday evening, I got a lovely call from Caremark.  In a matter of twenty minutes, I was registered AND she had applied the Humira patient assistance discount to the order (final total $15 for 90 day supply!!!!!!) AND she offered to include alcohol wipes and a sharps container for no charge.  It all arrived this afternoon.  48 hours after the appointment.  Crazy, right?

At this moment – it all feels like it will be OK.  I really don’t have any medical reason to believe that honestly.  Reading the history here, Caitlin has never had a remarkable response to any medication.  Her periods of remission have been more mystery than mappable.  But – we don’t need a miraculous response yet.  Just a little push.  A nudge.

For now, I’m calling this a hiatus. A break from our break.  I’m banking on getting back to those beautiful sandy beaches… and even though we’re all fine with our swim right now,  I reserve my right to scream if I decide that this water is too dang cold and choppy.  I know my JA Family will forgive me…and throw me a life-preserver.