Enbrel

[Guest guest]

Hi Connie,

I only waited two business days. My rheumatologist said it is different in

Canada we don't have the wait you do in the states. I will let you know if

and when it helps.

~~~Faye~~~

[Guest guest]

I can't believe that you have a group. There is no such group here. We are having a fundraiser event for JRA this weekend and my goal is to get a group started. From what I heard, though, trying to get a group of support is no easy task. I would love to have a group of parents with children who has this disease get together and discuss stuff. My , systemic, is on VIOXX and only on it until May. Then she comes out of the study and is off the medication for 2 weeks. I am sweating it now. She is also taking methotrexate. A wonder drug in my opinion, now, especially after reading that news letter. I hated this drug until yesterday. Anyway, I hope I will be able to get this support meeting off the ground

Theresa WPB, FL (, systemic)

>From: Allan Larson

>Reply- >" "

>Subject: Enbrel >Date: Thu, 11 Apr 2002 08:35:22 -0500 > >Hi,a couple of weaks ago they had a meating at our local chapter of the >arthritis foundation for JRA parents and there was a representitive >there from Immunex,Whyeth labratories.He was giving advise on how to >ensure your enbrel is not late.When you get down to 2 vials re order,he >also said the new plant is finished but they havent started production >yet,they are scrambiling though because they have there own deadline to >move the next set of people off of the waiting list.I hope is in >that group,the taper is really hard on him,he is having alot of >trouble,but he does have a few hours every day where he feals good,still >no rash or fevers,I am tickled to death that he has officially made it >to low doses 7.5mg pred. Becki and 3systemic > Send and receive Hotmail on your mobile device: Click Here

[Guest guest]

Dear theresa,I live an hour away from Nashville,where there is the arthritis

foundation.I am not exactly sure where west palm beach is but if you are

near a major city they probably have one also.I will look it up for you.Good

luck at getting a support group going. Becki and 3systemic

Theresa Kuhn wrote:

I can't believe that you have a group.

There is no such group here. We are having a fundraiser event for

JRA this weekend and my goal is to get a group started. From what

I heard, though, trying to get a group of support is no easy task.

I would love to have a group of parents with children who has this disease

get together and discuss stuff. My , systemic, is on VIOXX

and only on it until May. Then she comes out of the study and is

off the medication for 2 weeks. I am sweating it now. She is

also taking methotrexate. A wonder drug in my opinion, now, especially

after reading that news letter. I hated this drug until yesterday.

Anyway, I hope I will be able to get this support meeting off the ground

Theresa WPB, FL (, systemic)

>From: Allan Larson

>Reply-

>" "

>Subject: Enbrel

>Date: Thu, 11 Apr 2002 08:35:22 -0500

>

>Hi,a couple of weaks ago they had a meating at our local chapter of

the

>arthritis foundation for JRA parents and there was a representitive

>there from Immunex,Whyeth labratories.He was giving advise on how

to

>ensure your enbrel is not late.When you get down to 2 vials re order,he

>also said the new plant is finished but they havent started production

>yet,they are scrambiling though because they have there own deadline

to

>move the next set of people off of the waiting list.I hope is

in

>that group,the taper is really hard on him,he is having alot of

>trouble,but he does have a few hours every day where he feals good,still

>no rash or fevers,I am tickled to death that he has officially made

it

>to low doses 7.5mg pred. Becki and 3systemic

>

Send and receive Hotmail on your mobile device: Click

Here

[Guest guest]

Good Luck, Theresa. In either forming a new local group or getting more involved in the branch that's closest to your home. I also hope will do okay after she discontinues Vioxx. Is there a plan for a substitute, if she can't keep using it?

Aloha,

Georgina

----- Original Message -----

From: Theresa Kuhn

I can't believe that you have a group. There is no such group here. We are having a fundraiser event for JRA this weekend and my goal is to get a group started. From what I heard, though, trying to get a group of support is no easy task. I would love to have a group of parents with children who has this disease get together and discuss stuff. My , systemic, is on VIOXX and only on it until May. Then she comes out of the study and is off the medication for 2 weeks. I am sweating it now. She is also taking methotrexate. A wonder drug in my opinion, now, especially after reading that news letter. I hated this drug until yesterday. Anyway, I hope I will be able to get this support meeting off the groundTheresa WPB, FL (, systemic)

[Guest guest]

Great news, Becki : ) And I do hope that is in that next group to receive Enbrel.

Aloha,

Georgina

Hi,a couple of weaks ago they had a meating at our local chapter of thearthritis foundation for JRA parents and there was a representitivethere from Immunex,Whyeth labratories.He was giving advise on how toensure your enbrel is not late.When you get down to 2 vials re order,healso said the new plant is finished but they havent started productionyet,they are scrambiling though because they have there own deadline tomove the next set of people off of the waiting list.I hope is inthat group,the taper is really hard on him,he is having alot oftrouble,but he does have a few hours every day where he feals good,stillno rash or fevers,I am tickled to death that he has officially made itto low doses 7.5mg pred. Becki and 3systemic

[Guest guest]

My rheumy told me that the Mfrs of Embrel had to build a new plant due to high demand. I have only been on the list since March, but received a letter just yesterday to please be patient andddd that they anticipate ample supply by summer.

Kelli

[Guest guest]

Yes, Enbrel is in high demand. Those how have been taking Enbrel since

January 2000 have first serve and the others will unfortunately have to hold

on. What normally took 2-3 days to get at your pharmacy will now take up to

3 weeks with no guarantees. So, if you are like me who has to take Enbrel,

then you need to prepare yourself.

[Guest guest]

I was just thinking the same thing about Remicade Connie...

My dr said that the two are about equally safe.. not as hard on the liver

as some like Arava...

I just got nervous about remicaid cus someone on one list had told me that

it just totally shut down his immune system...

I just got a source from someone.. i think it was from this list about how

pregnancy can be a trigger for Reiter's.. I find that fascinating. I had

read that in passing before but this is even more clear. I had had a

miscarriage three months before onset of my symptoms. It was a really

messy one too. I bled for like 8 hours before they finally decided that a

D and c MIGHT be necessary... doh....they weren't even sure where I lost

the tissue... there was so much blood...seems like it would have been very

easy for tissue to have been left behind....

I hope now the remicade doesn't get too flooded in their requets!

On Sat, 13 Apr 2002, Connie wrote:

>>There was an article in the Wall Street Journal that said Enbrel had dropped

the ball with their product. Remicade was moving up to take

their place in the drug market. May turn out to be true.

Liz

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

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

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

" I'm just catching up with yesterday; by tomorrow I should be ready for

today! "

[Guest guest]

On Sat, 13 Apr 2002, Faye Dunn wrote:

> Hi Liz,

> If you live close to the border can you not get your prescriptions filled in

> Canada?

I live in the middle of teh US in nebraska.Plus if it is gotten outside

the US..you can't get it rhough medicaid i don't think.

Liz

~~~

" No one can make you feel inferior without your consent. " Eleanor Roosevelt

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

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]

not yet. i think her rheumy is waiting to see what happens. i can only hope that she is going to be fine. but not so sure as she just had a flare up last week. So, we can only pray. The fashion show was a tremendous success!! can't wait to see how much money we raised.

T-WPB, FL

>From: "Georgina"

>Reply- >

>Subject: Re: Enbrel >Date: Thu, 11 Apr 2002 13:59:56 -1000 > >Good Luck, Theresa. In either forming a new local group or getting more involved in the branch that's closest to your home. I also hope will do okay after she discontinues Vioxx. Is there a plan for a substitute, if she can't keep using it? > >Aloha, >Georgina > ----- Original Message ----- > From: Theresa Kuhn > I can't believe that you have a group. There is no such group here. We are having a fundraiser event for JRA this weekend and my goal is to get a group started. From what I heard, though, trying to get a group of support is no easy task. I would love to have a group of parents with children who has this disease get together and discuss stuff. My , systemic, is on VIOXX and only on it until May. Then she comes out of the study and is off the medication for 2 weeks. I am sweating it now. She is also taking methotrexate. A wonder drug in my opinion, now, especially after reading that news letter. I hated this drug until yesterday. Anyway, I hope I will be able to get this support meeting off the groundTheresa WPB, FL (, systemic) Chat with friends online, try MSN Messenger: Click Here

[Guest guest]

> Hi Everyone, Is there anyone out there on Enbrel who is having

problems because of the shortage? I've been waiting 2 weeks to get

a refill and still have not heard from anyone. Fortunately, I had a

3 week supply saved up but now I am getting very anxious. I'm going

to see if my doctor will put me on Remicade. If anyone else gets

Enbrel how long did you have to wait. What are your thoughts on

Remicade?? Thanks for any information. Elsie

Elsie,

You might want to try this. Go to www.google.com and click on

Groups - you'll see it at the top of the page. That will take you to

the Groups page. Type in Enbrel and up will pop thousands of usenet

notices about Enbrel and the newsgroups they originated in. You will

no doubt notice that alt.support.arthritis is often mentioned there.

Click on that name and it will take you right into that newsgroup.

You can post a message from there.

Hope this helps,

Mark

[Guest guest]

Ok Elsie,

I talked to my rhuemmy and he said there is a big delay. Enbrel is made in

Germany and they ran into some problems that stopped process. They are

somewhat backed up into July. If you don't need Enbrel they are trying to

clean the list so those on the waiting list can get Enbrel. I asked what

about the plant in Connecticut they were suppose to be building and he said

that it would not be completed until November. I just ran into problems on

Friday. Working on that tomorrow! So, that's what I heard.

in Texas

[Guest guest]

Do you mind if I put this in the RISG.ORG news links this week?

Format.

Forty patients with active, inflammatory ankylosing spondylitis were randomly

assigned to receive twice-weekly subcutaneous injections of etanercept (25 mg)

or placebo for four months.....At four months, 80 percent of the patients in the

etanercept group had a treatment response, as compared with 30 percent of those

in the placebo group (P=0.004). Improvements over base-line values for various

measures of disease activity, including morning

stiffness, spinal pain, functioning, quality of life, enthesitis, chest

expansion, erythrocyte sedimentation rate, and C-reactive protein, were

significantly greater in the etanercept group. Longitudinal analysis showed that

the treatment response was rapid and did not diminish over time.

Etanercept was well tolerated, with no significant differences in rates of

adverse events between the two groups>>

For full abstract:

http://content.nejm.org/cgi/content/short/346/18/1349?query=TOC

Uploaded to by Grannyof9

Rick Hahn

rick@...

http://www.risg.org

Enbrel

My husband gets regular updates from the New England Journal of Medicine and

I was surprised when this abstract poped up about Enbrel and Ankylosing

Spondylitis.

Now, we just have to find a way to get the Rx filled...

<<Forty patients with active, inflammatory ankylosing spondylitis were

randomly assigned to receive twice-weekly subcutaneous injections of

etanercept (25 mg) or placebo for four months.....At four months, 80 percent

of the patients in the etanercept group had a treatment response, as compared

with 30 percent of those in the placebo group (P=0.004). Improvements over

base-line values for various measures of disease activity, including morning

stiffness, spinal pain, functioning, quality of life, enthesitis, chest

expansion, erythrocyte sedimentation rate, and C-reactive protein, were

significantly greater in the etanercept group. Longitudinal analysis showed

that the treatment response was rapid and did not diminish over time.

Etanercept was well tolerated, with no significant differences in rates of

adverse events between the two groups>>

For full abstract:

http://content.nejm.org/cgi/content/short/346/18/1349?query=TOC>

[Guest guest]

No. It's fine. I'm trying to get my insurance company to approve

me for seeing a doctor out of the insurance group. Otherwise I

have to drive three to six hours one way to see a new

rheumatologist. I want to ask to go on the ENBREL treatment.

Ray

Enbrel

My husband gets regular updates from the New England Journal of

Medicine and

I was surprised when this abstract poped up about Enbrel and

Ankylosing

Spondylitis.

Now, we just have to find a way to get the Rx filled...

<<Forty patients with active, inflammatory ankylosing spondylitis

were

randomly assigned to receive twice-weekly subcutaneous injections

of

etanercept (25 mg) or placebo for four months.....At four months,

80 percent

of the patients in the etanercept group had a treatment response,

as compared

with 30 percent of those in the placebo group (P=0.004).

Improvements over

base-line values for various measures of disease activity,

including morning

stiffness, spinal pain, functioning, quality of life, enthesitis,

chest

expansion, erythrocyte sedimentation rate, and C-reactive

protein, were

significantly greater in the etanercept group. Longitudinal

analysis showed

that the treatment response was rapid and did not diminish over

time.

Etanercept was well tolerated, with no significant differences in

rates of

adverse events between the two groups>>

For full abstract:

http://content.nejm.org/cgi/content/short/346/18/1349?query=TOC>

[Guest guest]

In a message dated 5/3/02 3:18:03 AM Eastern Daylight Time,

jlanneau@... writes:

> What little I read today about Enbrel, if

> anyone has ongoing infection, " caveat emptor " ..

>

Jeff, The first clinical trial for Enbrel did not exclude people who were at

risk of infections (diabetic, etc) or people who had an on going infection.

If my math is correct, out of 25,000 people who were involved in the 1st

clinical trial, only 6 died out of the 30 who had infection. That figure

would amount to only .024. I believe this is considered by most as being very

small percentage for the benefits that this drug produces. From that 1st

clinical trial, doctors now know to closely screen people for infections or

risk factors before they are given the drug and they closely monitored and

tell the patients that if they develop symptoms of infection, to stop using

the drug. This is true of any lupus type symptoms. Both of these can be

reversed after the drug is discontinued. All drugs, herbs, food, etc. can

have adverse complications on people who are susceptible. We have to remember

that many who have advanced forms of spondy, if not kept under some control,

can have even more complications from their out of control inflammation.

(Heart, lung, kidney, joint replacements). These can have their mortality

rates. There have been recent, in the last 2 years, many more clinical trials

and the mortality rate is better after the screen process. It is much safer

than Remicade, and even that drug has helped many seriously ill and disabled

people. We always have to wave benefits against risks. Some of us are at

varying degrees of disease progression and at varying degrees of disability.

This has to be taken into consideration.

http://www.laurushealth.com/healthnews/reuters/NewsStory0215200214.htm

http://www.fda.gov/bbs/topics/ANSWERS/ANS00954.html

[Guest guest]

Hi

Great news! We will be praying that the Enbrel is your answer to putting

the dragon where it belongs! In remission! The diabetes I had..(steroid

induced)

went away with a lower dose, so that will be something to look forward to

also. Thank you for sharing.

~~tricia~~

-- enbrel

got to tell everyone that after weeks of feeling really down and depressed I

start on enbrel next week so I may be able to get the pred down from 27.5

and get rid of some other things like the diabetes etc hope every one else

is well

Carver

[Guest guest]

Dear we sure hope the same for you to feel better very soon. Thanks

for the update, Melt

enbrel

> got to tell everyone that after weeks of feeling really down and depressed

I start on enbrel next week so I may be able to get the pred down from 27.5

and get rid of some other things like the diabetes etc hope every one else

is well

> Carver

>

>

>

>

[Guest guest]

Yes, , the Enbrel wait is now until the end of 2002 or maybe even the

beginning of 2003. I called EnbrelHeadquarters and talked with them myself.

Also there are 20,000 people on the waiting list already. So it will be a

long WAIT. Canada has the drug Enbrel but will not share it with the U.S.A.

, for fear they will end up in the same mess we are in. I even called a

pharmacy in Canada and ask them to fill a Enbrel prescription , they said no

can do, if your not from Canada. Kind of depressing isn't it. So close, yet

so far away.

Connie NC

[Guest guest]

Ray, From what I understand.....the difference between Enbrel and Remicade is

the delivery system and cost. Remicade is by way of infusion and takes two

hours. It last a few weeks to a month. It is off the charts as far as cost

goes. Someone could spend up to $24,000 a year. It is also thought to be

temporary. However, if you have a bad case of Crohn's, it probably is worth

every penny. I'm not down playing our arthritis problems, but Crohn's can be

very, very serious. Enbrel can be given through a subcutaneous injection by

the patient. It is about $1000.00 a month. Both these drugs are still in

clinical trials as far as long term side effects go. They just do not know

what the long term effects of these drugs can do yet. Many of the people that

are on these drugs are still in clinical trials and therefore, don't have to

pay. The insurance companies don't approve many of us spondys...because of

the cost. I'm excited about the stories I hear about the TNF drugs, but

personally, I'm very cautious and waiting for further information on the long

term effects and if it can really put someone into remission long term...or

if the remission is only when you are taking the drug.

Best regards, Granny

[Guest guest]

Does anyone know if Remicade is in the same situation? How does

Remicade compare to Enbrel in results of improvement of conditions?

Ray

[Guest guest]

In a message dated 5/18/2002 12:47:10 PM Eastern Daylight Time,

charlie1622@... writes:

> . I have heard that Remicade works great for some, and others it doesn't

> help.

>

Connie,

i am on enbrel with spectacular results. my sister is also on enbrel

and not doing as well. both have success and failure stories..hope yours is a

success whichever way you go.

peace

pat

[Guest guest]

In a message dated 5/18/2002 3:10:21 PM Eastern Daylight Time,

Grannyof9@... writes:

> if the remission is only when you are taking the drug.

> Best regards, Granny

>

granny,

trust me it is only in remission with the drug!!! enbrel lasts 4.8

days exactly.

ppeace

pat

[Guest guest]

Yes Connie there does seem to be some debate/confusion as to

remicaid/enbrel. Some people say it is perfectly safe (e.g. my dr.) others

say it isn't. He also said they were basically the same drug as far as

action. I did look up Kineret too and I do'nt like the idea of shots

every day.. twice a week is bad enough *shiver* i know. i'm a pansy...and

yes people with diabetes have teo " shoot themselves " freqnuently...i

suppose i would get used to it... but acccckk.. I'm also VERY bad at

staying with things.. i'm pretty good about taking my meds now cus i have

that nice med caddy. but a shot requires more thinking than just popping a

pill intoi my mouth.. Thinking and I are often not on speaking terms,

esp when i am on the low side of bipolar....at those times it is a

struggle to even bathe or do anything period.

Well, i guess we shall see what we shall see, Eh Ray, Connie, and all?

> Ray, from what I know, Remicade is NOT in the same situation as

> Enbrel. There seems to be enough Remicade. My doctor offered it to me

> last visit and now I am waiting on my insurance Cigna to approve it.

> That will be a battle to the death. So, I am sure there is enough

> Remicade out there to meet demand. As to how it compares to Enbrel, I

> don't know. My doctor said they are basically the same drug. But I

> don't think so. I have heard that Remicade works great for some, and

> others it doesn't help.

>

> Connie NC

Liz

~~~

" No one can make you feel inferior without your consent. " Eleanor Roosevelt

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

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]

i have been reading peoples mail regarding enbrel/remicade and the concern

some have over taking a drug without not knowing the long term effects. all i

can say is be very very careful i am dealing with several major problems

including severe neuropathy due to the effects of the drugs used to treat HIV

in the early days of treatment when

we were desperate for anything, so just be careful. has anyone dealt with

IVIG or

IVGG for inflammatory neuropathy. it is intravenous immune globulin and is

given several days in a row as a loading dose and then once a month. it is

very expensive.

randy

[Guest guest]

In a message dated 6/2/2002 7:39:35 PM Eastern Daylight Time,

randelleff@... writes:

> be very very careful i am dealing with several major problems

> including severe neuropathy due to the effects of the drugs used to treat

> HIV

>

i just finished a neuro exam with blood tests, mri and eeg. everything is ok,

but your right we have to be on guard this is going where no one has bgeen

before.

peace

pat