Re: Stacey and Jordan, mtx injectible and Cigna

[Guest guest]

Hello! I don't really have anything fantastic to add that hasn't

been said, but I really just wanted to hug you. I totally know what

you mean about the shots and the tears, and the roller coaster ride

of having your lives turned upside down. The worst for me by far is

having my child hurt and upset, especially for shot time. I can't

imagine how the eye flares must be. doesn't get those, thank

God. She is at risk, however, with her RF factor and ANA. I really

wish that that would be more financial help for people with children

with diseases like this. We've spent a fortune on co-pays. Last

year 20% of our income went to medical expenses. I can't imagine

not having insurance, or having to fight any more than we have. I

certainly hope that your situation improves and that your little

sweety is finally feeling some relief soon. Take care!

~le (Dee)

> > >

> > > Sorry you are having such an awful time! Have you asked the

rheumy's

> > > office if they are a covered provider? I have found by asking

> > them if

> > > they take the insurance they will often know if they have

> > billed this

> > > ins company in the past. Sometimes if the dr is in a group,

> > and your

> > dr

> > > is not one that is covered by the ins, they will bill through a

> > > different dr in the group that is. I have had drs offices do

> > that in

> > the

> > > past. Call and talk to their billing department and see if

> > they can

> > > steer you in the right direction.

> > >

> > > I agree with about the folic acid. Have you tried using

emla

> > cream

> > > at the injection site for the Humira? That is supposed to

> > help. Sorry

> > I

> > > have no real experience giving shots, but I know that others

> > on the

> > list

> > > have used it. Or maybe giving the shots in a different area,

> > like her

> > > stomach, or when she is asleep would help.

> > >

> > > I feel your frustration with these insurance companies. I

> > wonder if

> > > Humira is one of the meds that the drug company will help you

> > to pay

> > > for. I know some do if your insurance does not or will not

> > cover it.

> > You

> > > could look into that. Also some kids take various stomach meds

> > to help

> > > with the nausea from the mtx. Maybe Jordan could take

> > something like

> > > that to coat the stomach.

> > >

> > > I hope that Jordan is feeling better soon! Hugs, Michele

> > ( 21,

> > > spondy)

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > ________________________________

> > >

> > > From: [mailto:jra-

> > list ] On

> > > Behalf Of stacey42690

> > > Sent: Wednesday, January 21, 2009 11:33 AM

> > >

> > > Subject: Vent & Advice needed... Long, sorry

> > >

> > >

> > >

> > > I'm not new to the board but I had to delete my old

address

> > > because of spam so I'm starting all over with a new ID. Here

> > is the

> > > short (ha!) version of Jordan's issues.

> > >

> > > Jordan was diagnosed around the age of 3 with Pauci JRA and 6

months

> > > later Uveitis showed up. Before the official DX she had

> > surgery on her

> > > knee to make sure there wasn't anything mechanically wrong

> > with her

> > > knee. The ortho drained the fluid that was in there and also

> > took a

> > > tissue sample to biopsy. We finally saw a ped rheumy and he

started

> > > her on naproxen. A few months later we added sulfasalazine,

then

> > > relafen. All that stopped when our insurance switched in 2006,

or

> > > 2007... I can't be sure which year because it all blends

together.

> > > Anyway, she went about 10 months with out care and meds. Her

JRA

> > > spread to her other knee and her eyes were in a constant

> > flare. We

> > > were able to have her eyes checked regularly, THANK GOD! and

> > she was

> > > constantly using the drops. We finally were able to be seen by

a

> > > rheumy at CHLA but he felt she was doing well and kept her off

> > > everything even though her knee was quite swollen. We went

> > back and

> > > saw another doctor and she started J on oral MTX, prednisone,

> > naproxen> and leucovorin. Once she started those drugs she was

> > sick all the

> > > time. Infection after infection. We stopped the steroid and

> > upped the

> > > MTX. Her eyes did respond but her RT knee did not. We decided

> > to do a

> > > joint injection. It lasted only a few weeks so I decided we

wouldn't

> > > be doing that ever again.

> > >

> > > Then we added Enbrel to the mix. She did ok. She didn't mind

> > the shots

> > > and her joints improved within a month. Her eyes on the other

> > hand did

> > > not. Flare after flare after flare... Her rheumy said the

Enbrel

> > > wasn't doing what it needed to be doing as far as her eyes go

> > so we

> > > switched to Humira. She HATES the Humira. Tears every time we

> > have to

> > > do it. We ice up, I hold her, we count and breathe. She gets

through

> > > it but it kills me to see her like that. She's also having

trouble

> > > with taking the MTX. She (or the med) is making her sick.

> > She'll be

> > > able to take 1 pill then she throws up and we can't get her to

take

> > > the rest. I've tried everything to get her to take them.

> > >

> > > She's in a flare now. She's had a fever, 100.5-102, on and off

since

> > > Friday. I took her to her ped on Friday and was told that she

> > has a

> > > cold. I don't think so. There is something else going on in

> > her little

> > > body. So no MTX last week because I had been told when she has

> > a fever

> > > to pass on meds. She has an appt this afternoon with her

> > rheumy but

> > > she hasn't had her Humira in 3 weeks due to the fact that our

> > > insurance switched again and I haven't been able to get anyone

> > to get

> > > the ball rolling to get her med. As it is I had to go round

> > and round

> > > with the insurance company to even see if her rheumy was

> > covered even

> > > though I called 3 times before we switched.I was told she was

> > but when

> > > I called last week to ask about our insurance cards that I

> > still don't

> > > have I was told she was NOT a covered provider. But on Friday

> > I got

> > > the autho for her visit. I don't know if today's visit is

> > covered or

> > > not.

> > >

> > > I feel like the insurance company doesn't get how important

> > these meds

> > > and doctor visits are to these kids. I totally went off on the

poor

> > > girl last week because I had enough BS from Cigna. My baby is

> > hurting> and I can't get her the medication she needs.

> > Everything has been a

> > > mess since September when I was hospitalized for almost a

> > week. Then

> > > in October I had a hysterectomy. We were finally starting to

> > get back

> > > on track when my husbands grandfather passed. Our lives are

being

> > > turned upside down by that now because we're moving in with his

> > > grandmother to take care of her and then all this insurance

> > crap and

> > > Jordan flaring. I have to say that Jordan is an amazing little

girl.

> > > She really doesn't complain but I can see it in her eyes that

she

> > > hurts. She tries to cover the limping and when I ask about it

> > she says

> > > she's alright. I don't know how she does it.

> > >

> > > How do I get the correct information from Cigna? Everyone I

> > talk to

> > > has a different answer about who is a covered provider. Every

> > time I

> > > get off the phone with them my head hurts and I'm crying. All

> > I want

> > > to do is take care of my baby and they're making it so damn

hard....

> > >

> > > Stacey,

> > > & Jordan, 6, Pauci & Uveitis

> > >

> > >

> > >

> > >

> > >

> > >