Sunday, April 4, 2010

Back From Boston

S L O W and S T E A D Y
Dr. Foster met with us this past week & we discussed Charlotte's strategy of weaning after being flare free for 2 years on the two drugs that curbed the inflammation (Remicade & Methotrexate).

Charlotte has some constant variables that bump her out of the cookie cutter approach. I appreciate that. The arthritis was very, very stubborn at the beginning, & the approach taken of the chosen medications has taken care of the inflammation for 2 years. So now we go very slow with the weaning.
So slow that by my math.... she will be 6 1/2 by the time she is off all meds. Four years total of meds for the uveitis.... I hope this kicks it permanently to the curb.

Charlotte's variables are:
1. early onset (she was 2 when she was diagnosed at a 3+ in both eyes - that's the highest degree of inflammation)
2. ana positive (ana is a protein in the blood, you can still be ana + & NOT have arthritis, but it is an indicator of her arthritis)
3. hldra 5 gene (I would love to explain this one, but I cant. I will ask our ped. rheum at a later date).
When we started with these two meds it looked like this:
1. Methotrexate shot given at home, weekly - its an immune suppressant - the arthritis GO-TO drug that almost every child w/ arthritis we know, is on.
2. Remicade chemo infusions given at hospital, started at every 4 weeks, then stretched to 4 sessions at 5 weeks, then 4 sessions at 6 weeks.

So now with the weaning, we will:
a. stretch Remicade to every 8 weeks (4 sessions)
b. lower her Methotrexate dose by .10 mls
a. stretch Remicade to every 10 weeks (4 sessions)
b. lower her Methotrexate dose by .10 mls
a. stretch Remicade to every 12 weeks (4 sessions)
b. lower her Methotrexate dose by .10 mls
DROP ALL TOGETHER
June 21, 2012 - have a HUGE PARTY!!!!
Slit lamp appts (at the ophthalmologists - the only way to detect arthritis in the eyes) continue for the next 7 years every 3 months. Hello 2017 & age 10!

The way Charlotte took control of that slit lamp at Dr. Foster's was impressive. Chin on the rest, forehead to the band, hold very still. He stepped back & said, "I cant believe she's 4, she acts like she's 7!" I said, "years of practice!" She's a pro...

4 comments:

Laura said...

Woo Hoo for the plan!! Bummer...reading the words 2017. Jim and I had to laugh out loud at that one. I guess I still live in the "la la land" world that maybe we will kick this thing our of our lives sometime soon. Positive thinking!!! Glad the appt. went so well!

Hugs to the whole Cox family!

The Day Family

Dry Land (in search of...) said...

Love the ride on Mother Duck!!! And of course, the plan of action. Such a sweetie pie!

Jennifer said...

I am new to the commenting thing - I may be doing this twice!
It was so great to read about the Boston experience and about the embarking on the weaning experience! As always, we are inspired by your journey and we keep Charlotte's predicament in our thoughts and prayers regularly!
Love & hugs ~
The Henrys

Amy Cunningham said...

lSO, SO, SOOOOO happy that her appointment went so well!! We are just now at the beginning of what could possibly be the 2 yr road to remission. This is the longest she has gone flare free. Eyes have been clear since December.*crossing all I have for luck* Love the pictures :) Miss you on Facebook :(