Re: Dang it. I won't be able to get help - To and

[Guest guest]

I understand what you are saying. I am quite sure that the costs of

producing a drug like that and then all the trials it goes through before it

hits the market.... is atronomical. So I guess I can see why they have to sell

at such a high price for the first few years. Someday, the patent will run out

and it will come in generic. That will be good for us but not good for the

pharmaceutical company.

, thanks for the support. I will talk to my doc when I go in next time

and ask for samples and explain that I cannot afford it. If I have to go off

it, I will taper it off instead of dropping it cold turkey. I dread the

consequences of the pain I will experience though.

love and hugs,

Debra V.

villaridge@...> wrote:

>

> I feel your pain Debra - it's not a cheap drug and I so don't

understand who in the world it can possibly be THAT darned expensive.

I hate (I am lower middle class) being taken by the #%*%* drug

companies. And I tried to get off it - my pain was so bad I could

not even miss a dose. So I know I'm stuck for life.

>

>, I realize that I have a different view of the drug companies,

having worked at two BIGGIES. I know that many drugs are very

expensive; but unless you have spent even three months working in one

small BUT important area of getting the required info to the FDA for

approval, you probably can't imagine how many people, how long the

process is just to submit a drug --- maybe for human trials! One

company that I worked for had 10 of us working in a space that had

rolling, lockable file cabinets full of their research in them. That

was half of the space, and the other half was taken up by

workstations for 10 people, at least one very big and powerful copy

machine and a set of shelves down the middle of the room where we

would also work to put binders together to send to the FDA. I

couldn't even begin to tell you what that drug was now but almost all

of us in that room were temps and we had a decent hourly rate,

we could, if necessary work overtime -- which of course was time and

a half. Then, you added whatever added to the bill for each of

us in that tiny little room. That drug giant could hve been paying

$10,000 a week for we temps. And I started there on that job in the

early fall and we finally got all of the books bounded, packaged,

delivered to the area where the boxes were then put on pallets,

wrapped in shrink wrap and loaded on to a Fedex, UPS whatever truck,

overnight to the FDA area where their staff reviews all of these

stacks of material, and if that was just to get permission to start

human studies, then you had your clinical scientists who worked with

institutions around the country doing double blind studies, reporting

to the research scientists on a weekly basis the status, and if there

happened to be one adverse reaction, there was a number of forms to

be written up, signed and sent out to a variety of places within in a

certain period of time following the receipt of that reaction. That

could shutdown the whole study, all of the time spent in the labs

developing the formulas, all the time collating and preparing the

info to be sent to the FAD was down the drain.

I can understand why the general population thinks that the big drug

companies are making big bucks because you are paying a very high

price for the Lyrica; but I can also tell you that if you were to

take one particular major highway from the just north of Philadephia

and drive northeast across New Jersey, you would discover yourself in

the middle of what I can only think of as one of the largest grouping

of drug company buildings in the country. And they are building more

as the need for new meds increases.

The reason I know about the clinical scientist side of a drug is that

I worked for another major company in the research area --- the drug

has been out there for a number of years now but there are constantly

new uses being discovered for that drug. I also worked in other

areas of that company and you would really be amazed at what it takes

to get even one drug on the market. I know I did work with one

department that was in about the 2nd stage of the study, and my job

was to type up reports every week --- one small thing they forgot to

tell me was that when I updated the previous week's reports and

numbers, I was to save the old ones. So we had to have the computer

specialist come and restore what I had deleted. Before I left that

company and we moved to western PA, that drug did get approval and

some of you may take it --- but there could have been hundreds of

people involved in getting that approved and available. So while I

know the expense is very high, it could go down eventually once the

company is seeing a return on the investment they had put into

getting, for example Lyrica approved and available.

My husband likes to tell people when he hears someone complaining

about the cost that they should see how many pallets will be sent to

the FDA to get the drug approved. And then, you have certain drugs,

such as Duract, that was very effective for me -- I only took it on

weekends and usually only one on a Saturday morning and I was pain

free and had the energy to work in our very large yard and my

rose/lavender garden, my perennials. Unfortunately, it some how was

found to help dental patients, and that's were the problem happened.

Either the dentists did not read or get the info that it was NOT to

be taken for more than 10 days (and that meant 3 a day, not the one I

would take some Saturdays) It caused liver damage when used for

longer periods (or it could cause such damage). So, the company

voluntarily withdrew the drug! I am waiting for someone to buy the

patent, tweek it and discover that it is back out there for docs to

prescribe.

And I know some of you have read this same info from me in the past,

but I have seen both sides of the coin as far as the drug companies

go. They could spend millions on one drug and suddenly find it did

not do what it was supposed to do. So, they have lost both time and

money.

So, while I understand how frustrating it is not to be eligible for a

drug from the company because you are just over the income level, I

have some understanding of what is happening at Pzier. And I think I

said at the beginning of this post, that it just may be that the more

people who can take the drug, the more the company recoups on the

expenditures to put it on the market, the cost might go down.

> ------------------------------------

>

> 1. While it is wonderful to share our experiences with everyone on

the list as to what treatments do and don't work for us, pls always

check with your dr. Some treatments are dangerous when given along

with other meds as well as to certain health conditions or just

dangerous in general.

>

> 2. If you are in a difficult situation (doesn't matter what it is)

pls don't be afraid to ask for help. It is the first step to trying

to make that situation better.

>

> 3. To unsubscribe the e-mail is: Fibromyalgia_Support_Group-

unsubscribe

>

> 4. Also, it is not uncommon for more than one member to be feeling

bad at the same time when it comes to flares and b/c of that

potentially take something another member says the wrong way. And

that includes the things that one member may find funny (even if it's

laughing at fibro itself) even though we who deal with illness

whether one such as fibro or multiple illnesses try to keep a sense

of humor.

>

> 5. Pls let's be gentle with each other, and if you are having a bad

day pls let us know so that we can do our best to offer our support.

>

> Have a nice day everyone.

>

[Guest guest]

I checked - patent doesn't run out on Lyrica until 2016 - it's about that

time for Cymbalta also.

Hopefully he will be able to provide you with the samples Debra!

hugs

debra van ness ladybug75901@...> wrote:

I understand what you are saying. I am quite sure that the costs of

producing a drug like that and then all the trials it goes through before it

hits the market.... is atronomical. So I guess I can see why they have to sell

at such a high price for the first few years. Someday, the patent will run out

and it will come in generic. That will be good for us but not good for the

pharmaceutical company.

, thanks for the support. I will talk to my doc when I go in next time and

ask for samples and explain that I cannot afford it. If I have to go off it, I

will taper it off instead of dropping it cold turkey. I dread the consequences

of the pain I will experience though.

love and hugs,

Debra V.

---------------------------------

You rock. That's why Blockbuster's offering you one month of Blockbuster Total

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[Guest guest]

To anyone that is having a hard time paying for your scripts out of

pocket, please try the pharmaceutical companies websites! They will

help you get your scripts at a discount or for free depending on your

income and circumstances. I am currently trying to get cymbalta for

free just waiting on the doctor to finish the paperwork. The companies

will send either to your home or to your doctors so no need for

pharmacies.

Good Luck!

Alison

Near Philadelphia, PA

> I understand what you are saying. I am quite sure that the

costs of producing a drug like that and then all the trials it goes

through before it hits the market.... is atronomical. So I guess I can

see why they have to sell at such a high price for the first few

years. Someday, the patent will run out and it will come in generic.

That will be good for us but not good for the pharmaceutical company.

> , thanks for the support. I will talk to my doc when I go in

next time and ask for samples and explain that I cannot afford it. If

I have to go off it, I will taper it off instead of dropping it cold

turkey. I dread the consequences of the pain I will experience though.

>

> love and hugs,

> Debra V.

>

> ---------------------------------

> You rock. That's why Blockbuster's offering you one month of

Blockbuster Total Access, No Cost.

>

>

[Guest guest]

I think they'd tell me I make too much money but I'll look into it! Thank you

hugs

alydoremus333 alydoremus333@...> wrote:

To anyone that is having a hard time paying for your scripts out of

pocket, please try the pharmaceutical companies websites! They will

help you get your scripts at a discount or for free depending on your

income and circumstances. I am currently trying to get cymbalta for

free just waiting on the doctor to finish the paperwork. The companies

will send either to your home or to your doctors so no need for

pharmacies.

Good Luck!

Alison

Near Philadelphia, PA

---------------------------------

You rock. That's why Blockbuster's offering you one month of Blockbuster Total

Access, No Cost.