Re: Humira and support groups

[Guest guest]

Hi ,

So sorry to hear about how hard a time you are haveing.

To go with what said I was on the American College of Rheumatoligy

website and found a link to all the major drugs used for arthritis and their

patiant assistance programs.I don't know if I can find it again but will try and

pass the info along.

Hugs

Becki and 6 systemic

[Guest guest]

:

First of all, I am sooo sorry that you have 2 members of your family

suffering from auto-immune disorders. That must be quite a challenge.

I am , mom to Rob, 15 with spondy. He is on Enbrel. Thank goodness,

our insurer covers it with a $70 per 3 month supply co-pay. However, when

we had different insurance, and Rob had to go on growth hormone (at his

current dose, this runs $60,000 a year), we too had a cap on our family's

prescription coverage at $5000. The manufacturer of the growth hormone

(Lilly) had a patient access program and provided it to us at a cost of

$1500 a year. Other drug manufacturers have similar programs. Your doctor

should know his drug rep for Humira and be able to refer you to the drug

company rep who can start you on the process of getting a greatly reduced

price for the medication. Most major drug manufacturers have such

programs. You can even go to the website for Humira, find out who the

manufacturer is, and search to see if they have any such programs.

I hope that this helps and that the Humira is the answer for you, and

that you can get some help from the manufacturer. Keep us posted, ok?

and Rob 15 Spondy

On Thu, 14 Oct 2004 21:43:56 -0000 " " <jt102493@...>

writes:

Hello everyone! My name is and I have 3 boys. I used to read

this list every day but I stopped for awhile, overwhelmed by too

many committments and not enough time!

My oldest (TJ) is 10 and disease free. My youngest, Owen, (5 years

old) has juvenile ankylosing spondilitis that is not responding to

meds right now. My middle boy, Liam, (8 years old) has

an " unspecified " auto-immune disease that includes seizures,

migraine headaches, swollen lymph nodes, mouth sores, breathing

difficulty, extreme fatigue and arthritis in many, many both small

and large joints (including his back) and is very much not

responding to meds right now. His doctors have alternately been

calling his disease lupus and Behcet's, although his ANA is minimal

most often which doesn't lend itself to a lupus diagnosis. Of

course, Behcet's is so rare in this country that I wonder that I've

ever heard the name at all!

My children have never met another child with arthritis except for

brief hellos in between patients at the rheumatologist. I live on

Long Island, in New York. I have not found a single support group

for their age group. Does anyone know of a group in our area?

And here's my big question...Their doctor is talking about starting

them on Humira and it sounds like their is a lot of hope for this

drug. However, I would have to sell one of the children into

slavery to be able to afford it! It is $650.00 each injection (x 2

children) every other week. Our health insurance is great but not

great enough. For a family of five we get $7,500 worth of

prescription medicine per year. We passed that " Go " and collected

our $200 months ago. Goodness knows what the lifetime cap is, I

don't have the guts to check. Has anyone else every been through

this?

We are taking out a home equity loan to try and at least start them

on something, Liam especially is getting worse every week but I feel

desperate. I can't be the only one who can't afford this, can I?

Any advice on anything mentioned, medicine, diagnosis, symptoms,

support groups... would be much appreciated

Thanks,

[Guest guest]

-HI ,

Im so sorry you have to deal with this x2. Wow. I was wondering if

you couldnt take the boys to a Shrinner hospital, is there one near

you. ive never been but I understand they pay for all medications??

Just an idea...

Good luck and let us know how it goes.

Hugs Helen and nicholas (7,systemic)

-- In , " " <jt102493@o...> wrote:

>

> Hello everyone! My name is and I have 3 boys. I used to

read

> this list every day but I stopped for awhile, overwhelmed by too

> many committments and not enough time!

>

> My oldest (TJ) is 10 and disease free. My youngest, Owen, (5

years

> old) has juvenile ankylosing spondilitis that is not responding to

> meds right now. My middle boy, Liam, (8 years old) has

> an " unspecified " auto-immune disease that includes seizures,

> migraine headaches, swollen lymph nodes, mouth sores, breathing

> difficulty, extreme fatigue and arthritis in many, many both small

> and large joints (including his back) and is very much not

> responding to meds right now. His doctors have alternately been

> calling his disease lupus and Behcet's, although his ANA is

minimal

> most often which doesn't lend itself to a lupus diagnosis. Of

> course, Behcet's is so rare in this country that I wonder that

I've

> ever heard the name at all!

>

> My children have never met another child with arthritis except for

> brief hellos in between patients at the rheumatologist. I live on

> Long Island, in New York. I have not found a single support group

> for their age group. Does anyone know of a group in our area?

>

> And here's my big question...Their doctor is talking about

starting

> them on Humira and it sounds like their is a lot of hope for this

> drug. However, I would have to sell one of the children into

> slavery to be able to afford it! It is $650.00 each injection (x

2

> children) every other week. Our health insurance is great but not

> great enough. For a family of five we get $7,500 worth of

> prescription medicine per year. We passed that " Go " and collected

> our $200 months ago. Goodness knows what the lifetime cap is, I

> don't have the guts to check. Has anyone else every been through

> this?

>

> We are taking out a home equity loan to try and at least start

them

> on something, Liam especially is getting worse every week but I

feel

> desperate. I can't be the only one who can't afford this, can I?

>

> Any advice on anything mentioned, medicine, diagnosis, symptoms,

> support groups... would be much appreciated

>

> Thanks,

[Guest guest]

Thank you so much for everyone's advice on medicine affordability. We have

tried a Shriner's hospital, (it's about 5 hours away) but we really didn't

feel that they were getting what they needed. We have Tom Lehman in

Manhattan and he has been an outstanding blessing. Very knowledgable, and

his book, It's Not Just Growing Pains, is phenomenal. (We made him sign

it!)

We are applying for child health plus and medicaid right now. If this helps

us to afford our meds, I will be sure to let everyone know. Also, I will be

applying for Abbot's patient assistance program, I'm so grateful to have

heard about it.

Is there anyone on this list from Long Island, NY?

Thanks again, everyone.