Enbrel

[Guest guest]

Pris,

Unfortunately, Enbrel is not officially approved for treatment of AS. I

was taking it (for AS) and it was working quite well. My insurance will

now only pay 1/2, which means it would cost me about $575 per month to

continue. I had my last dose a week ago and I am very sad that I cannot

continue. I began to see a difference after a few weeks therapy.

Judi

nelliestar@... wrote:

>

> Is Enbrel approved for those who suffer from AS?

> How much do the injections cost a month, and how long a waiting list is there

> (or has there been in the past)?

> How long does it take to see it work on the pain/inflammation?

> Thank you for you help.

> Pris

>

> www.valentinesperformingpigs.com

>

>

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

>

[Guest guest]

In a message dated 11/23/02 3:37:23 PM, dommer@... writes:

<< My brother, who has AS, is on Enbrel, and it's done good things for him. I

plan to call him tonight, (if he's home), and talk about the good and bad. Wish

me luck! >>

Jade, I really appreciate your reply.

My insurance does not cover prescriptions.

Hopefully, in a few years, prices will go down.

Pris

[Guest guest]

Judi,

I am so sorry about that.

Can you suggest a drug that would be your second choice?

How has this disease affected you?

I sure appreciate the list's help.

It can be very lonely and depressing.

I was diagnosed a few weeks ago, and don't know where to turn.

Pris

www.valentinesperformingpigs.com

[Guest guest]

I have been on Enbrel for a long time now. It has been my miracle drug (for my

PA). I pay $5 for a month's worth and each time my pharmacy receipt says that I

saved $1800. I'm very lucky to have great insurance. However, the risks of

Enbrel are still unknown. Last month I had a tumor removed from my lower right

leg. It turned out to be malignant - dermatofibrosarcoma. They had me stop

Enbrel two weeks before my surgery. Two weeks after my surgery they gave me the

go ahead to start it again only to find out that the area where I had the tumor

removed and a skin graft done was getting an infection. They had me stop the

Enbrel immediately and I can't start it again until I'm totally healed.

Herb L.

[Guest guest]

In a message dated 11/23/02 3:37:24 PM, dommer@... writes:

<< Dear Pris,

Regretfully, I don't think Enbrel is approved yet for ReA. >>

I used Enbrel for over a year and I suffer with ReA.

[Guest guest]

>

> Regretfully, I don't think Enbrel is approved yet for ReA. >>

My dr says it is used for polyarthritises.

So that is the basis i'm going on for my meds.

Liz

~~~

" I've learned that people will forget what you said, people will forget

what you did, but people will never forget how you made them feel. "

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

EMAIL: juliette@... **ICQ 49746198** MSN & AIM LizKP1952**

PERSONAL HOMEPAGE PAGE http://members.tripod.com/~LizK

ADDult HOME PAGE: http://members.tripod.com/~LizK/addult.htm

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Guest guest]

Hi Becki,

Abbies Enbrel number came last week also, but since she is now firmly entrenched with Remicade, we didn't need it. I wonder how many others are turning this down after such a long wait. Economically this will probably hurt them a great deal.

Christy (Abbie, 13 systemic)

[Guest guest]

Hi Christy,

I agree with that one and they will really be in trouble when that new one can't think of the spelling or the research name(letters and numbers)Is supposed to work as well as Enbrel but is only one shot every two weeks.Even though s letter came two months after we joined the study in Cincy,I don't regret it and don't plan on dropping out.I like the idea of having Doctors very knowledgable monitoring side effects and the fact that will be helping other children with JRA.He would of started the Enbrel anyway.How's Abbie doing?

Hugs

Becki and 4systemic

[Guest guest]

I was under the impression that two studies have been done for Ankylosing

Spondylitis with Enbrel. They are currently in their third phase study that

started in the forth quarter of this year. We should have some results early

next year when they may include Enbrel in the protocol for insurance and

Medicare for AS/ReA. The " much improvement " percentage rates in the first two

studies was 80% vs 30% placebo. These studies were on a small group (40

patients). The third study is a much, much larger group. From information

gleaned from KickAS support group, the improvements have been much like our

group. Some have gone into a remission or almost remission state after a few

months. Unlike the remission rates for ReA, Ankylosing Spondylitis has few.

I'm not saying this is " the miracle drug " we've all waited for...but it seems

to give more positive results than any of our previous drugs. This is not

given yet as a first line drug...it is given after all others have been

unsuccessfully tried. I get a kick out of this statement...as none of our

drugs work effective enough to give us a symptom free life! They do not know

the long term side effects yet. This could be a draw back. It seems, from

what I have read, that when you have taken the drug for many months...and you

have a remission...and you stop the Enbrel...that your AS will return. So,

here in, lies the problem. How long can we take the drug...at what cost to

us, physically and financially, if when we stop taking Enbrel, Remicade,

alalimumab (or other anti-TNF drugs) the AS returns? Many doctors will put

down a Dx for an approved disease until Ankylosing Spondylitis or ReA is

added to the list. The sucess has been so good...so far...that many other

pharmaceuticals are rushing to put their versions on the market. Maybe greed

will come up with a better anti-TNF?

Best regards, Connie (granny)

[Guest guest]

Granny is right, the data for the TNF's look excellent. Enbrel has an

indication for PA. The AS and ReA indications are probably more of a matter

of getting enough people in the trials and the cost involved in funding these

trials, which the companies pay the research facilities in excess of $3000

per patient. The Enbrel data for AS looks excellent according to studies I've

read. They will need larger studies to get an official FDA indication. 40% of

prescriptions are written out of indication. I believe in some instances

because of the cost of the TNF's, they are using the lack of an indication as

an excuse not to pay for the medicine. Also Remicade is indicated for RA and

Crohn's. Its seems kinda obvious that these drugs would be effective for many

people with related conditions. A new TNF will be coming to the market from

Pfizer within the next few years pending FDA approval.

In my pursuit of knowing as much as humanly possible about the RA type

arthritises that affect us, I'm reading The Arthritis Foundation's guide to

Alternative Therapy. It is an interesting book and there are some ideas in it

that I'm going to try. Its main premise is to keep taking your mainstream

medicines and then where prudent there are some alternative things you may be

able to do. Some of these could then help you in some circumstances reduce

the amount of pain meds or other meds you need. What is great about this book

is it tells you which things are bogus and which therapies have studies that

back up their use. It's also written by a reputable foundation. I hope this

book will benefit you. I found this at the local library.

Dave in NC

[Guest guest]

Granny is right, the data for the TNF's look excellent. Enbrel has an

indication for PA. The AS and ReA indications are probably more of a matter

of getting enough people in the trials and the cost involved in funding these

trials, which the companies pay the research facilities in excess of $3000

per patient. The Enbrel data for AS looks excellent according to studies I've

read. They will need larger studies to get an official FDA indication. 40% of

prescriptions are written out of indication. I believe in some instances

because of the cost of the TNF's, they are using the lack of an indication as

an excuse not to pay for the medicine. Also Remicade is indicated for RA and

Crohn's. Its seems kinda obvious that these drugs would be effective for many

people with related conditions. A new TNF will be coming to the market from

Pfizer within the next few years pending FDA approval.

In my pursuit of knowing as much as humanly possible about the RA type

arthritises that affect us, I'm reading The Arthritis Foundation's guide to

Alternative Therapy. It is an interesting book and there are some ideas in it

that I'm going to try. Its main premise is to keep taking your mainstream

medicines and then where prudent there are some alternative things you may be

able to do. Some of these could then help you in some circumstances reduce

the amount of pain meds or other meds you need. What is great about this book

is it tells you which things are bogus and which therapies have studies that

back up their use. It's also written by a reputable foundation. I hope this

book will benefit you. I found this at the local library.

Dave in NC

[Guest guest]

Posted for Janet.

Enbrel

Sorry, it looks like I made a mistake. Enbrel may not yet be formally

FDA

approved for AS but looks like it will be very soon. This study could

possibly be used in appealing an insurance company's denial of Enbrel

for

AS. Another possibility is getting into the Phase 3 clinical trial:

FOR IMMEDIATE RELEASE, November 11, 2001

New Phase 2 Study Shows Ankylosing Spondylitis

Patients

Respond to ENBREL® (etanercept)

SAN FRANCISCO - Data from a Phase 2 clinical study

of

ENBREL®

(etanercept) in ankylosing spondylitis will be

presented this week

at the 65th Annual Scientific Meeting of the

American

College of

Rheumatology. This study, conducted by Dr.

and

colleagues at the University of California, San

Francisco, is the

first randomized, placebo-controlled study of

ENBREL

for the

treatment of ankylosing spondylitis. Phase 2

results

showed that

80 percent of 20 patients receiving ENBREL reached

the

primary

composite endpoint of improvement compared to 30

percent of 20

patients receiving placebo.

" This is pioneering work in ankylosing

spondylitis, "

says Jane

Bruckel, Executive Director, Spondylitis

Association of

America.

" The community looks forward to additional data

from

the new

study. "

In the Phase 2 double-blind, placebo-controlled

study,

40 patients

with ankylosing spondylitis were randomized to

receive

either 25

mg of ENBREL via subcutaneous (under the skin)

injection or

placebo twice per week for a four-month period.

The primary endpoint was a comparison of the number

of

patients

achieving a clinical response in the ENBREL and

placebo

groups. A

clinical response was prespecified as a greater

than or

equal to

20 percent improvement in three of five outcome

measures

(duration of morning stiffness, nocturnal spinal

pain,

a functional

index (BASFI), patient global assessment and

swollen

joint score).

Eligible patients fulfilled the modified New York

clinical criteria for

ankylosing spondylitis, and were required to have

evidence of

active spondylitis, which was defined as presence

of

inflammatory

back pain, morning stiffness equal to or greater

than

45 minutes,

and patient and physician global assessment of

moderate

or

higher disease activity. Patients were able to

continue

nonsteroidal anti-inflammatory drugs (NSAIDs),

prednisone and

disease modifying anti-rheumatic drugs (DMARDs) at

stable

dosages during the trial.

Results after four months showed that:

80 percent of patients receiving ENBREL®

(etanercept)

achieved a clinical response compared to 30

percent of

patients receiving placebo (primary endpoint

of

the study), as

measured by a composite measure.

ENBREL was generally well-tolerated with no

differences

in rates

of adverse events between the two groups. There

were no

serious adverse events and no withdrawals due to

adverse

events.

A large, multicenter Phase 3 clinical study of

ENBREL

for the

treatment of ankylosing spondylitis has been

initiated.

For

information about enrolling in the study, call

toll-free:

1-800-IMMUNEX (1-800-466-8639).

ABOUT ANKYLOSING SPONDYLITIS

Ankylosing spondylitis is a chronic inflammatory

arthritis

characterized by joint stiffness, pain and extra

bone

growth that

can result in partial or complete fusion of the

spine.

The bones of

the spine may grow together, causing the spine to

become rigid

and inflexible. Other joints such as the hips,

shoulders, knees, or

ankles also may become involved. About 300,000

people

in the

U.S. suffer from ankylosing spondylitis. Symptoms

of

the disease

appear most frequently in young men between the

ages of

16

and 35. There is currently no cure for ankylosing

spondylitis. For

more information regarding ankylosing spondylitis

and

the

Spondylitis Association of America, please refer

to

www.StopAS.org or call 1.800.777.8189.

ABOUT ENBREL

An application for marketing approval of ENBREL®

(etanercept) to

treat RA was fast-tracked by the U.S. Food and

Drug

Administration in 1998. Six months after the

application was

submitted, the FDA approved ENBREL for reducing

the

signs and

symptoms of moderately to severely active RA in

patients who

have had an inadequate response to one or more

DMARDs.

The

following year, the FDA approved ENBREL for

reducing

signs and

symptoms of moderately to severely active

polyarticular-course

juvenile rheumatoid arthritis in patients who have

had

an

inadequate response to DMARDs. In June 2000, the

FDA

approved

ENBREL for reducing signs and symptoms and

inhibiting

the

progression of structural damage in patients with

moderately to

severely active RA. ENBREL is the only tumor

necrosis

factor (TNF)

inhibitor approved for use without methotrexate. It

is

also the

only TNF inhibitor approved for use as a

first-line

therapy for RA.

ENBREL acts by binding TNF, one of the dominant

cytokines or

regulatory proteins that play an important role in

both

normal

immune function and the cascade of reactions that

cause

the

inflammatory process of RA and psoriatic

arthritis.

ENBREL

competitively inhibits binding of TNF molecules to

the

TNF receptor

sites. The binding of ENBREL to TNF renders the

bound

TNF

biologically inactive, resulting in significant

reduction in

inflammatory activity.

SINCE THE PRODUCT WAS FIRST INTRODUCED, SERIOUS

INFECTIONS, SOME INVOLVING DEATH, HAVE BEEN

REPORTED IN PATIENTS USING ENBREL. MANY OF THESE

INFECTIONS OCCURRED IN PATIENTS WHO WERE PRONE TO

INFECTIONS, SUCH AS THOSE WITH ADVANCED OR POORLY

CONTROLLED DIABETES. RARE CASES OF TUBERCULOSIS

HAVE ALSO BEEN REPORTED. ENBREL SHOULD BE

DISCONTINUED IN PATIENTS WITH SERIOUS INFECTIONS.

DO NOT START ENBREL IF YOU HAVE AN INFECTION OF

ANY

TYPE OR IF YOU HAVE AN ALLERGY TO ENBREL OR ITS

COMPONENTS. ENBREL SHOULD BE USED WITH CAUTION IN

PATIENTS PRONE TO INFECTION. CONTACT YOUR

PHYSICIAN IF YOU HAVE ANY QUESTIONS ABOUT ENBREL

OR INFECTIONS.

There have been rare reports of serious nervous

system

disorders such as multiple sclerosis, seizures or

inflammation of

the nerves of the eyes. Tell your doctor if you

have

ever had any

of these disorders or if you develop them after

starting ENBREL.

There have also been rare reports of serious blood

disorders,

some involving death. Contact your doctor

immediately

if you

develop symptoms such as persistent fever,

bruising,

bleeding,

or paleness. It is unclear if ENBREL® (etanercept)

has

caused

these nervous system or blood disorders. If your

doctor

confirms

serious blood problems, you may need to stop using

ENBREL.

The most frequent adverse events in

placebo-controlled

clinical

trials involving 349 adults were injection site

reactions (ISR)

(37%), infections (35%), and headache (17%). Only

the

rate of

ISR was higher than that of placebo. The most

frequent

adverse

events in a methotrexate-controlled clinical trial

of

415 adults

treated with ENBREL with early-stage RA were

infections

(64%),

ISR (34%), and headache (24%). Only the rate of ISR

was

higher

than that of methotrexate. In all 1,197 RA

patients

studied,

malignancies were rare (1%).

Immunex Corporation and Wyeth-Ayerst Laboratories,

a

division

of American Home Products Corporation(NYSE: AHP),

market

ENBREL in North America. Other AHP affiliates

market

ENBREL

outside of North America. Immunex manufactures

ENBREL.

Additional information about ENBREL, including

full

prescribing

information, can be found on the company-sponsored

Web

site at

(www.enbrel.com) or by calling toll-free

888-4ENBREL

(888-436-2735).

Immunex Corporation is a leading biopharmaceutical

company

dedicated to improving lives through immune system

science

innovations.

Wyeth-Ayerst Laboratories, a division of AHP, is a

major

research-oriented pharmaceutical company with

leading

products

in the areas of women's health care,

cardiovascular

therapies,

central nervous system drugs, anti-inflammatory

agents,

infectious disease, hemophilia, oncology, and

vaccines.

AHP is one

of the world's largest research-based

pharmaceutical

and health

care products companies. It is a leader in the

discovery,

development, manufacturing and marketing of

prescription drugs

and over-the-counter medications. It is also a

leader

in vaccines,

biotechnology, and animal health care.

NOTE: Except for the historical information

contained

herein, this

news release contains forward-looking statements

that

involve

substantial risks and uncertainties. Among the

factors

that could

cause actual results or timelines to differ

materially

are risks

associated with research and clinical development,

regulatory

approvals, our supply capabilities and reliance on

third-party

manufacturers, product commercialization,

competition,

litigation and

other risk factors listed from time to time in

reports

filed by

Immunex with the SEC, including but not limited to

risks described

under the caption " Important Factors That May

Affect

Our Business,

Our Results of Operations and Our Stock Price "

within

our most

recently filed Form 10-Q. The forward-looking

statements contained

in this news release represent our judgment as of

the

date of this

release. Immunex undertakes no obligation to

publicly

update any

forward-looking statements.

-----End Original Message-----

Rick Hahn

rick@...

http://www.risg.org

[Guest guest]

In a message dated 12/1/02 2:12:21 PM, fdunn7@... writes:

<< The reason that my rheumatologist thought that Enbrel might work for me is

because I had such a good improment with the cortisone nerve blocks in my SI

area. >>

I had no improvement with the cortisone nerve blocks but oral prednosone

does wonders for me!

If the blocks didn't work, does this mean I probably would not be helped by

Emnbrel?

Pris

[Guest guest]

The problems with lung side-effects greatly concerns me. I have asthma which

has not been a big problem until recently. I have a lot of pain with breathing

due to lung spasms, which are constant. I am prone to bronchitis and upper

respiratory infections, including frequent staph infections of the sinuses.

This does not bode well for my hopes of taking Enbrel to reduce inflammation.

Ray

[Guest guest]

In a message dated 11/27/02 5:47:29 PM, risgorg@... writes:

<< Sorry, it looks like I made a mistake. Enbrel may not yet be formally

FDA

approved for AS but looks like it will be very soon.

>>

I have taken Enbrel and now I'm on Remicade (again), and I don't believe

they were approved for ReA when I was first given them, but my doctors would

put me down as suffering from what ever diease it was approved for (mostly

RA). I was never questioned.

Make sure you ask your doctors to help in any way they can!! ReA,

Fibro

[Guest guest]

Hi Sandy,

Yeah,I know all about those lawyers just trying to make a buck or two from someones misfortune.You find those lawyers everywhere.All medicines have side effects and risks involved.Enbrel has been around since 1988 ,yes some people have experianced bad things from it,but NO ONE can actually blame Enbrel.Duiring clinical trials they have to list every single thing that happend to the person while taking the drug.They have learned that the serious things happened to people with underlying diseases such as heart diseas,diabetes,or a latant phase of TB or muscular sclerosis.They now know who should not take it.My son was diagnosed with systemic JRA 1 month before his 3rd b-day and was put on Ibuprofin and oral MTX.Four months later the MTX still wasn't doing anything so we switched to injections.What a HUGE differance it made almost immediatelly.My son was also taking intermediate doses of steroids and unfortunatelly when the dose was lowered the symptoms came back.He was slowely raised to be maxed out on 25mg MTX,his application for Enbrel had been turned in a few months earlier,but due to the shortage it looked hopeless.They added Plaquenil as a desperation drug,they really didn't expect it to help alot but was worth a try until the shortage was over and he could receive Enbrel.More bad news it looked like it would be next spring.I found out about an Enbrel trial that led to a 3yr Enbrel safety study and we went for it.This was in September of this year after 10 months of being on the waiting list. responded within 13 days and he has breezed through his steroid taper.He is a very happy,active 4 yr old boy now.He no longer has pain or fatigue which used to be severe.We live in Tennessee and drive him to Cincinnati Childrens Hospital every 3 months.They have been studying Enbrel on children since it began,they have had some non responders but have not had a child develop any of the serious side effects that have been listed.The main side effects are injection site reactions,that go away after a while and alot of runny noses.I keep on his allergy medicine and it helps alot.If your child does develop an infection that produces a fever you may have to skip a dose or two to help the immune system fight it off.Before Enbrel he only had a couple things normal with his labs,I dont know if it's a systemic thing or it is typical for kids with JRA to have messed up labwork.One month after starting Enbrel his labs came back perfect and they still are.He has just begun month 4 of Enbrel therapy.He had the typical injection site reactions from months 2-3 but they have stoped now.I am supposed to call the study director about anything that happens to ,even if I don't think it's related to the Enbrel.They have to list EVERYTHING.I can tell you this though,there is no special monitoring for Enbrel like with the MTX because there are no toxicities.If I were you I would give injectable MTX a try first.It may be all your daughter needs.That way if later on down the road you need something new or more the Enbrel will still be there and more safety studies will be complete.I hope my little MTX/Enbrel story helped,but remember it is not the miricle drug for all.Some people have normal levels of TNF and others just have way to much of it that even the Enbrel can't control.I wish you luck with your 2 yr old, it kills me when any child is diagnosed with JRA but it especially the really small ones.

Hugs

Becki and 4 systemic

[Guest guest]

Hi Sandy,

Yeah,I know all about those lawyers just trying to make a buck or two from someones misfortune.You find those lawyers everywhere.All medicines have side effects and risks involved.Enbrel has been around since 1988 ,yes some people have experianced bad things from it,but NO ONE can actually blame Enbrel.Duiring clinical trials they have to list every single thing that happend to the person while taking the drug.They have learned that the serious things happened to people with underlying diseases such as heart diseas,diabetes,or a latant phase of TB or muscular sclerosis.They now know who should not take it.My son was diagnosed with systemic JRA 1 month before his 3rd b-day and was put on Ibuprofin and oral MTX.Four months later the MTX still wasn't doing anything so we switched to injections.What a HUGE differance it made almost immediatelly.My son was also taking intermediate doses of steroids and unfortunatelly when the dose was lowered the symptoms came back.He was slowely raised to be maxed out on 25mg MTX,his application for Enbrel had been turned in a few months earlier,but due to the shortage it looked hopeless.They added Plaquenil as a desperation drug,they really didn't expect it to help alot but was worth a try until the shortage was over and he could receive Enbrel.More bad news it looked like it would be next spring.I found out about an Enbrel trial that led to a 3yr Enbrel safety study and we went for it.This was in September of this year after 10 months of being on the waiting list. responded within 13 days and he has breezed through his steroid taper.He is a very happy,active 4 yr old boy now.He no longer has pain or fatigue which used to be severe.We live in Tennessee and drive him to Cincinnati Childrens Hospital every 3 months.They have been studying Enbrel on children since it began,they have had some non responders but have not had a child develop any of the serious side effects that have been listed.The main side effects are injection site reactions,that go away after a while and alot of runny noses.I keep on his allergy medicine and it helps alot.If your child does develop an infection that produces a fever you may have to skip a dose or two to help the immune system fight it off.Before Enbrel he only had a couple things normal with his labs,I dont know if it's a systemic thing or it is typical for kids with JRA to have messed up labwork.One month after starting Enbrel his labs came back perfect and they still are.He has just begun month 4 of Enbrel therapy.He had the typical injection site reactions from months 2-3 but they have stoped now.I am supposed to call the study director about anything that happens to ,even if I don't think it's related to the Enbrel.They have to list EVERYTHING.I can tell you this though,there is no special monitoring for Enbrel like with the MTX because there are no toxicities.If I were you I would give injectable MTX a try first.It may be all your daughter needs.That way if later on down the road you need something new or more the Enbrel will still be there and more safety studies will be complete.I hope my little MTX/Enbrel story helped,but remember it is not the miricle drug for all.Some people have normal levels of TNF and others just have way to much of it that even the Enbrel can't control.I wish you luck with your 2 yr old, it kills me when any child is diagnosed with JRA but it especially the really small ones.

Hugs

Becki and 4 systemic

[Guest guest]

Hi - my rheumy told me that most insurance companies have a loophole that

allows Enbrel to be dispensed. He said because it is prescribed as a " device "

and not a prescription " drug " , it would be like wheelchairs and items like that.

Sounds like yours hasn't closed that loophole yet. Yea! Mine is Blue Cross.

J

[ ] enbrel

i will be getting my enbrel monday or tues. it is comming fed ex.

god i hope it works. there have been quetions about it being kept

cold. i would say yes because the company is sending me some type of

cooler that will keep it cold for 24 hrs. i really know nothing about

this medication i just hope it works. nothing has yet. i was suprised

that i did not have any trouble getting it other thatn the fact i

have to have mine mailed, i cant go pick it up, something to do with

my insurance i think. i hope everyone had a wonderful christmas.

kyle

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

Moderator 2 cents: By the time I finally got Enbrel approved by the insurance

they only would do it thru mail order. Maybe they have it cheaper that way? PatB

[Guest guest]

[ ] enbrel

i will be getting my enbrel monday or tues. it is comming fed ex.

god i hope it works. there have been quetions about it being kept

cold. i would say yes because the company is sending me some type of

cooler that will keep it cold for 24 hrs. i really know nothing about

this medication i just hope it works. nothing has yet. i was suprised

that i did not have any trouble getting it other thatn the fact i

have to have mine mailed, i cant go pick it up, something to do with

my insurance i think. i hope everyone had a wonderful christmas.

kyle

Please visit our Psoriatic Arthritis Group's informational web page at:

http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

In August 2001 list member Jack aka(Cornishpro@...) began to

conduct extensive research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage.

Also remember that the list archives comprise a tremendous amount of

information (Over two years of messages and answers).Feel free to browse them at

your convenience.

Let's hear from some of you lurkers out there! If you have a comment or

question chances are there is a person who has been around a while who can help

you out with an educated guess for an answer. If not we can at least steer you

in the right direction with a good website to go to for the answers.

Blessings and Peace,

Atwood-Stack, Founder

Alan , Web & List Editor

Jack , Newsletter Editor

Pat Bias, List Editor

Ron Dotson, List Editor

and many others who help moderate (thank you!)

[Guest guest]

Connie,

I'd be very comfortable getting Enbrel through the mail. If it needs to be

refrigerated it would be shipped in such a manner as to keep it within specs.

Both the DOD and VA use a mail order system for medicine and its quite good

as do many health insurers. If the FDA didn't believe something could be

shipped via mail order, they would have the authority to stop it.

Dave in NC

[Guest guest]

Hi,

I have been receiving my Enbrel no problem for about a year now throught the

mail. You set up with the company you are working with a delivery date and

you have to be there to receive it. They are very professional and always

call before your doses are out to set up the next month. It is always on ice

and the dellivery man will not leave it without a human body to receive it.

Good Luck.

A note to Enbrel users. Enbrel enabled me to walk again and got rid of the

awful symptoms of excruciationg pain that came in the morning when my feet

hit the ground getting out of bed. It has worked exceptionally well but you

must take the doses and not miss them. Finances have not been good and I have

a 35.00 co-pay and got off my dose twice a week for awhile and my symtoms

started returning. You have to stay on course. The 40.00 is better than

180.00 go with the mail and it will be fine. I am still here. Hope this

helps.

Beverley

RS, FM, HBLA-27+

[Guest guest]

i have always recieved enbrel via mail. it comes in a cold pack 4 week

supply. i have had no problems. best of luck.

pat

[Guest guest]

You're cute Connie. I love that analogy. I get this funny mental picture

of you and your dr just sitting there squeaking for all you are worth.

My dr insists I'm not AS though cus nothing shows on the xrays. I keep

trying to remind him that it won't always show up initially on

conventional xrays...

Sometimes having you wonderful people to help me keep squeaking makes all

the difference---it takes so much effort to keep squeaking...it's easier

just to drop back and say oh h*ll nothing I do is gonna help anyway...

But having caring friends keeps that from happening.

HUGS to everyone--once again:) and not the last time either:)

On Thu, 2 Jan 2003, Connie wrote:

You've heard the saying the squeaking wheel gets oiled, well there is some

truth to that. Keep squeaking and get your doctor to squeak with you.I know that

some trials were done out in California with Ankylosing Spondylitis and Enbrel.

I am considered a Spondylitic variant, because I show symptoms from both AS and

Reiters. I think most of us are like that. Good luck, and do not give up. I know

it can be very frustrating, but just keep going at it.

Liz

~~~

" I've learned that people will forget what you said, people will forget

what you did, but people will never forget how you made them feel. "

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

EMAIL: juliette@... **ICQ 49746198** MSN & AIM LizKP1952**

PERSONAL HOMEPAGE PAGE http://members.tripod.com/~LizK

ADDult HOME PAGE: http://members.tripod.com/~LizK/addult.htm

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Guest guest]

In a message dated 1/27/03 1:07:06 PM, jturner@... writes:

<< I'm nervous but hopeful. I absolutely

have to get on Enbrel and off prednisone. >>

Janet, what about getting on the AP therapy?

Pris

[Guest guest]

In a message dated 1/27/2003 4:07:04 PM Eastern Standard Time,

jturner@... writes:

> . My doc. can't lie and say I have

> Rheumatoid Arthritis unfortunately.

>

> Thanks so much for listening.

>

> Janet in San Francisco

>

>

how many of the diagnostic criterea for RA do you have? i'm not suggesting a

lie! if you have the signs/symptoms wouldn't you benefit from the relief

associated with decreased inflammation? hope enbrel gets approved for ReA.

pat