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

parties overWell, 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.

This entry was posted in Flares, Humira, Methotrexate, Pain, Prednisone, Remission and tagged , . Bookmark the permalink.

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

  1. Margo says:

    I wish your daughter the best. My daughter is 3 and currently taking MTX and Remicade etc etc. I hope you and your family get through this bump in the road.

    • jiamom says:

      Thank you Margo! Best hopes to your little one…. I remember how it was to have such a young babe struggling. I hope the meds have brought quick control to your little warrior!

  2. Sophie Levindoski says:

    Lindsay had been on Humira for a few years before it stopped working (age 5-8). Then she was off for a couple more years trying all the others (kineret, thalidomide, orencia….). Actemra wasn’t available yet so we went back to Humira bc all other options were exhausted and she was still not well. . Much to our surprise, Humira and Arava put her in remission and she’s been that way ever since for the last 3 years! In fact, if she’s still in remission next summer , we will try to wean off. Because it took so long to get her in remission we’ve been very cautious about removing anything.
    Wonderful that Caitlin is involved in her care! Lindsay is 13 and definitely starting to express her opinion on these things too! I remember Lindsay hiding under the dining room table bc she hated the Humira shots. Now we use prescription Gebauers pain ease spray and she says it takes the edge off. It’s much easier giving shots to a teenager than a little girl! Although I still hate it.
    Praying it works for Caitlin too!

    • jiamom says:

      Thank you Sophie! I had forgotten that Lindsay was on Humira. That bring so much hope! Amazing how we have followed this path together for so long now. I feel like I know you – and I don’ think we’ve ever been in the same room together! And thanks for the tip on the pain ease spray. I had assumed incorrectly that Caitlin would not want to sue spray, or ice… or even have special bandaids. But we’ll be doing the first shot tonight and she insisted that I seek out some princess bandaids after all (it’ll be retro!) I had forgotten how to do this!

  3. Brenda Anderson says:

    Colleen, Just two days ago my husband asked me, out of the blue, “How is Caitlin Ryan doing?” And now this morning, I saw your post. There must be a deep connection between us “systemic” families. I love your positive outlook and am right along with you in praying that this is just a small break from your break. Thank you for speaking from your heart. As always, you are an inspiration.

    • jiamom says:

      Thank you Brenda! I was thinking last night that I should add to my post… I know how lucky we were to have had a break at all. I know it. So many kids and parents in our JA family would trade so much for that kind of break. We’ve been very fortunate! And we’ll be working dang hard to get back there :) Sending love to the Anderson clan. Waiting to see some beautiful fall photos – you have such an eye in addition to having a great camera. Living in So Cal – I need to get my dose of fall vicariously through others. <3

  4. Kimberly Holcomb says:

    Colleen I know how you feel. Tyler was in remission for 1 1/2 yrs. Right before we moved from Hawaii he started showing signs he was coming out of it with his ankles being swollen. Dr. Yamamoto didnt want to do anything at the time because we were moving across country. So when we got to Maryland and saw the new Rheumy in DC, he was out of remission. I wanted to scream and cry. He was doing so well. So they upped his MTX and Enbrel. Now he’s doing better and not having any pain or swelling with the increase of both meds. My heart goes out to you and Caitlin. You are a strong family and this is just another hurdle in the world we live in with this disease. When I met you in Hawaii a few years ago, you became my inspiration along with your beautiful daughter. Our kids are strong. They will get through this. I’m glad to hear she is speaking up at her doctor appointments. Tyler is slowly doing that. I let him run his doctors appointments. He always looks over at me and I tell him to say what he needs to say. His new Rheumy is great and listens to what Tyler has to say. Keep positive and keep being a inspiration to others.:)

    • jiamom says:

      I remember when you announced the move, I wondered what the change would bring from tropical year round to major seasonal changes. But Tyler showed signs before the move – which in a way was a blessing because it left no question about Maryland being a trigger. I am so glad he is doing better now – and with Enbrel. And I loved seeing you guys enjoying the winter last year – and the summer….
      These kids are strong, for sure. Thank you so much for the loving care sent my way! It is wonderful to not walk it alone….

  5. Jenny Nelson says:

    Colleen,

    Thank you for sharing your journey with us. You have such a way of sharing your journey…a true gift. Caitlin is so strong, too…and how she is handling this just further proves that point. “God gives the toughest battles to His strongest soldiers.”
    I will be praying for you. I am getting ready to go to a JA mom’s coffee support group this morning. It is your blog and JA coffees that make this journey a little easier. Savannah is not doing so hot, either, but we just keep swimming. She has 2 1/2 hours of OT therapy at Children’s Hospital next week to hopefully give us some tips with helping her write. If they tell me anything incredibly useful, I will try to remember to pass it along to you for Caitlin.
    I love you, my JA mom friend! You are strong, and it is okay to scream sometimes. I will be praying.
    -Jenny
    hopeforsavannah.blogspot.com

    • jiamom says:

      Thank you Jenny – my love and gratitude to you as well. I love the idea of a JA mom’s coffee… as I am home today with a sick four-year-old, I am still in my pajamas. And I have coffee. And I have a lot of very loving conversation coming from so many experienced, wise, compassionate women via cyberspace…. so I guess I am having JA coffee too!
      My prayers and best hopes for Savannah…I hope that she gets some relief and good tips at OT. “The race is not always to the swift, but to those who keep on running”… or in our case, swimming! XO

  6. Frances Pugh says:

    Colleen,
    My heart goes out to you and Caitlin and the rest of your family. I know your family has the strength and determination to get over this bump in the road. It is hard to believe the kids just swam in the ocean together just a few months ago, remind Caitlin of that strength she had then and the fun times. I know the Humira hurts, I am reminded every other week by Hannah. Good luck and we are praying that the meds work.

  7. rarainbow says:

    Good luck to you and Caitlin. It’s great that Caitlin is becoming more involved in her health decisions. I hope that the medication works well so she can feel better soon! Wishing you both strength through this time.

  8. ~Mariah~ says:

    You are such an amazing mama – I always learn so much from reading your posts! I will keep my fingers crossed that the medications help, though I’m sure you’ll understand if I keep them crossed metaphorically as I am having some arthritis issues of my own! And I’m so happy you get to use Caremark – they are the only specialty pharmacy I have ever had any luck with! Many hugs to you and Caitlin!!

  9. Jenni says:

    I know you and Caitlin are super involved in arthritis awareness and know a lot of other people with JA and RA, but there is a group on Facebook called My Immune System Hates me which a a group for teenagers and young adults who have arthritis/rheumatic conditions so if Caitlin wanted any more support that is always there!
    Jenni

  10. I realise this is an old post but I just had to say something.

    I was a JIA from the age of 18 months until I was 16. I went into remission for 7 years, but it all came back when I was 23. (I hope that’s not too depressing…I was told it was VERY rare for it to come back after such a long break HURRAY)

    As far as arthritis goes, my case has never been an extreme one. I see you mention a young girl that passed away…or hands that are so swollen that a person can’t write (I’m a writer so this would have felt like the end of the world to me). I often tell myself that things could be worse, and to be positive. But you know what? It sucks. The medication, the steroids, the pain, the sickness. The not being able to travel for a year like my friends because where would I get my prescriptions and all of this stuff.

    I’m not really sure where I’m going with this, but all my life I don’t talk about it. I don’t read about it. I ignore it when I can. But maybe I shouldn’t. Maybe it would help myself and others if I opened up about this invisible disease. Because it does suck and maybe I shouldn’t suffer in silence?

    Sorry. I’ve basically garbled all over your post but reading this made me tear up but also made me feel weirdly positive. I hope Caitlin and all your family are well.

  11. Jessica says:

    http://ourarthritisjourney.proboards.com/

    A forum for parents and families dealing with the diagnosis of Juvenile Arthritis

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