Update on Cody & Actemra

[Guest guest]

Hello everyone,

Sorry it's been so long since my last posting.  Cody has had 3 Actemra infusions

since April.  He's done remarkably well with the last dosage.  He actually asked

his doc if he could try going off some of his meds.  He was on MTX weekly with

the Actemra, which he stopped last Saturday night.  The doc is stretching out

his Actemra injections to five weeks between cycles this month, then six weeks

the next to test the Still's disease.  Cody hasn't been taking any of his meds

the last two weeks, just because he doesn't want to, but other than fatigue I

haven't noticed too many other concerns. 

If you'll remember, back in April I was having some difficulties with Cody's

behavior/attitude.  Well, that's still up & down.  He's started seeing a

therapist, biweekly which pended from a three day stay in the Behavioral Health

unit.  Anyway, the therapist things Cody may have Tourette's Syndrome, which

could be causing all of his behavioral issues.  His appointment with the

specialist isn't until July 15th.  I'm thankful though that we were able to see

him GRADUATE last Saturday.  He just started a diesel mechanics job.  He's

trying to work fulltime.  I told him, all he can do is try...and take it from

there.  He also started his first college course last night, to prepare for

fulltime courses in the fall.  Oh, I have noticed that when he does FLIP OUT on

me, that his rash comes out severely!  Also, for the last five months now, his

bloodwork has all been normal...Does anyone know what is considered remission?

As far as insurance and Actemra, I have so far, gotten Cody to accept going to

college fulltime, so he'll remain on his dad's insurance.  The cost of each

visit has been over $9,500.00 billed to Blue Cross/Blue Shield, which alittle

over $5,000.00 is actually accepted as payment.  The co-payment difference

though is alittle over $500.00.  Luckily, Cody also has Medical Assistance as

back up and their covering that portion.  Back in April, MA denied Actemra. 

After I spoke to them and left them know that Blue Cross/Blue Shield was going

to pay over 3/4 of the payment, they said they would pick up the rest.  However,

if Cody decides...he doesn't want to continue his education and drops Blue

Cross, there is no guarantee that MA will pick up where Blue Cross left off.

Thanks to all of you for your postings.  I took alot of notes tonight.

Tricia (Cody's mom)