Re: apparently things can vary

[Guest guest]

> I recently learned of a patient who is extremely heavy (thanks to

> prednisone of course) and has an unbelieveably high IgE count

(well

> above what is listed as accepted for taking Xolair) who is taking

a

> higher dose than either Doug or I. (Doug and I are taking the

> highest dose one is " supposed " to get). This person sees a

specialist

> who was involved in the clinical trials or something like that.

So

> apparently if one works hard enough with one's doctor and/or

> insurance company, exceptions can be made and different dosing or

> other things can be taken into consideration.

>

> Here's to a healthy new year for all of us.

I would like to introduce myself on this board I think I am the

person you are talking about on the other board " Mr mycoplasm " I

couldn't use the name here because it was taken. I would also like

to thank Doug for starting this forum and am encouraged about the

future. A few postings that I read tell me I am in the right place

i.e. monthly infections,nebs, antibiotics that don't work

anymore,PREDNISONE, etc...... If anyone has questions feel free to

ask me about my dosing and experiences. Here are some

specifics.Weight 276lbs down from 330lbs. I gained over a 100 lbs

from steroids. My IGE was 1227(not a typo) and I receive 9

injections every two weeks and had been turned dowm 4 times by my

insurance company.It is too early to tell but I am noticing little

breakthroughs like during my last monthly infection I did not have

to turn to Prednisone to help me out maybe it's the xolair maybe

it's not. I get my third set of injections this coming week. Lets

all have a great new year.

Bill

[Guest guest]

--- In , " mrpooch2004 " <billpucci@c...>

wrote:

> --- In , " pyle456 " <coachmac@w...>

wrote:

> > I recently learned of a patient who is extremely heavy (thanks to

> > prednisone of course) and has an unbelieveably high IgE count

> (well

> > above what is listed as accepted for taking Xolair) who is taking

> a

> > higher dose than either Doug or I. (Doug and I are taking the

> > highest dose one is " supposed " to get). This person sees a

> specialist

> > who was involved in the clinical trials or something like that.

> So

> > apparently if one works hard enough with one's doctor and/or

> > insurance company, exceptions can be made and different dosing or

> > other things can be taken into consideration.

> >

> > Here's to a healthy new year for all of us.

>

> I would like to introduce myself on this board I think I am the

> person you are talking about on the other board " Mr mycoplasm " I

> couldn't use the name here because it was taken. I would also like

> to thank Doug for starting this forum and am encouraged about the

> future. A few postings that I read tell me I am in the right place

> i.e. monthly infections,nebs, antibiotics that don't work

> anymore,PREDNISONE, etc...... If anyone has questions feel free to

> ask me about my dosing and experiences. Here are some

> specifics.Weight 276lbs down from 330lbs. I gained over a 100 lbs

> from steroids. My IGE was 1227(not a typo) and I receive 9

> injections every two weeks and had been turned dowm 4 times by my

> insurance company.It is too early to tell but I am noticing little

> breakthroughs like during my last monthly infection I did not have

> to turn to Prednisone to help me out maybe it's the xolair maybe

> it's not. I get my third set of injections this coming week. Lets

> all have a great new year.

>

> Bill

Bill,

Thanks for joining and especially posting. Well, with your IGE at

1227, I guess mine was 800 after all. I am sorry your insurance

company is being tight. I was shocked when I found out mine would

cover all but a small monthly copay. 9 shots every two weeks???? How

do you afford the expense? Those shots are 500.00 each!!!!

I am still nebbing 4 times a day with a mixture of meds, however I

am down to only 5 mg of pred a day. I am also bulding back up on my

regular allergy shots. My asthma seems a little better lately.

Hopefully, the Xolair is finally doing something. I have been on it

since September.

Glad to have you aboard,

Doug

[Guest guest]

Hey Doug,

My insurance company finally caved in because I brought in Dr

in, who was one of the main investigators for Xolair, with my

pulmonologist and they worked out the dosing for me. I pay $15.00

every two weeks for my deductable. I just want to let people know

that if they are persistant with their insurance companies they will

be able to get Xolair. Remember it's the insurance company's job to

turn you down because of the cost. I also want to acknowledge a dear

friend of mine who passed away this summer from asthma. His name was

Rob Arlt and he passed away before Xolair was approved. It may have

saved his life. His body just gave up after years of steroid

therapy. I myself have been in the ICU too many times and like many

of us have sought out treatment at Nat Jew. Hospital. The reason

many of us get infections is because of prolonged steroid treatment

lowering our immune systems. I am praying that Xolair is what they

say it is so I can finally leave steroids behind. Dr luskin told me

not to be discouraged because the onset of action is slow and seeing

resutls beginning at 6 weeks is the norm. He also said this drug may

change my quality of life considerably.

Thanks again

Bill Pucci

> > > I recently learned of a patient who is extremely heavy (thanks

to

> > > prednisone of course) and has an unbelieveably high IgE count

> > (well

> > > above what is listed as accepted for taking Xolair) who is

taking

> > a

> > > higher dose than either Doug or I. (Doug and I are taking the

> > > highest dose one is " supposed " to get). This person sees a

> > specialist

> > > who was involved in the clinical trials or something like

that.

> > So

> > > apparently if one works hard enough with one's doctor and/or

> > > insurance company, exceptions can be made and different dosing

or

> > > other things can be taken into consideration.

> > >

> > > Here's to a healthy new year for all of us.

> >

> > I would like to introduce myself on this board I think I am the

> > person you are talking about on the other board " Mr mycoplasm " I

> > couldn't use the name here because it was taken. I would also

like

> > to thank Doug for starting this forum and am encouraged about

the

> > future. A few postings that I read tell me I am in the right

place

> > i.e. monthly infections,nebs, antibiotics that don't work

> > anymore,PREDNISONE, etc...... If anyone has questions feel free

to

> > ask me about my dosing and experiences. Here are some

> > specifics.Weight 276lbs down from 330lbs. I gained over a 100

lbs

> > from steroids. My IGE was 1227(not a typo) and I receive 9

> > injections every two weeks and had been turned dowm 4 times by

my

> > insurance company.It is too early to tell but I am noticing

little

> > breakthroughs like during my last monthly infection I did not

have

> > to turn to Prednisone to help me out maybe it's the xolair maybe

> > it's not. I get my third set of injections this coming week.

Lets

> > all have a great new year.

> >

> > Bill

>

> Bill,

>

> Thanks for joining and especially posting. Well, with your IGE at

> 1227, I guess mine was 800 after all. I am sorry your insurance

> company is being tight. I was shocked when I found out mine would

> cover all but a small monthly copay. 9 shots every two weeks????

How

> do you afford the expense? Those shots are 500.00 each!!!!

>

> I am still nebbing 4 times a day with a mixture of meds, however

I

> am down to only 5 mg of pred a day. I am also bulding back up on

my

> regular allergy shots. My asthma seems a little better lately.

> Hopefully, the Xolair is finally doing something. I have been on

it

> since September.

>

> Glad to have you aboard,

>

> Doug

[Guest guest]

--- In , " mrpooch2004 " <billpucci@c...>

wrote:

>

> Hey Doug,

> My insurance company finally caved in because I brought in Dr

> in, who was one of the main investigators for Xolair, with my

> pulmonologist and they worked out the dosing for me. I pay $15.00

> every two weeks for my deductable. I just want to let people know

> that if they are persistant with their insurance companies they

will

> be able to get Xolair. Remember it's the insurance company's job to

> turn you down because of the cost. I also want to acknowledge a

dear

> friend of mine who passed away this summer from asthma. His name

was

> Rob Arlt and he passed away before Xolair was approved. It may have

> saved his life. His body just gave up after years of steroid

> therapy. I myself have been in the ICU too many times and like many

> of us have sought out treatment at Nat Jew. Hospital. The reason

> many of us get infections is because of prolonged steroid treatment

> lowering our immune systems. I am praying that Xolair is what they

> say it is so I can finally leave steroids behind. Dr luskin told me

> not to be discouraged because the onset of action is slow and

seeing

> resutls beginning at 6 weeks is the norm. He also said this drug

may

> change my quality of life considerably.

>

> Thanks again

> Bill Pucci

>

Bill,

I am glad your insurance came to it's senses. We all pay high

premiums so we can have coverage when we need it, right? It is not

our fault that the medicine we need is expensive. Mine is only 35.00

a month copay for 4 shots. I was shocked when I found out that they

would cover the costs without a fight. After all, I pay 950.00 a

month for coverage for me and the wife. The church does not pay any

of this, it comes straight off the top of my gross salary. My church

is real good about giving me a raise each year to cover each time it

goes up.

I am down to 5 mg of predisone now from 30 mg. I have been on pred

since August. I had pre mature cataracts from taking pred when i was

younger and had cataract surgery in both eyes in the mid 90's.

Doug