Enbrel

[Guest guest]

Hi Diane,

I just read what you wrote about Enbrel and was happy to hear it. I

will be starting that drug as soon as the manufacture does his

thing--you know about all the stuff you have to go through to finally

get it. I went to my rheumologist about 3 weeks ago, because I could no

longer take the pain and could not do for myself. He drained my knee

so it would bend again and shot it full of steroids and then gave me a

steroid shot in the arm and put me on steroids. I am currently taking

perdisone twice a day and methatrexate once a week until I can get on

the Enbrel. I hope that I have the same reaction to the drug that you

do. I am 39 and feel 93 most days--of course not with the steroids on

board. Thanks for letting me know that there is hope and relief from

the pain and disability. Thank you again and I hope you continue to

feel like you should.

[Guest guest]

Thanks . Debbie

[Guest guest]

In a message dated 01/30/2002 10:24:35 AM Eastern Standard Time,

ladypfeedbak@... writes:

> You see....I've been fighting my Reumy

> for two years against going on Enbrel...he knows that

> I don't want to go on it and at this point..we know

> that I'm ONLY going to TRY it.

- I believe that your rheumy is probably trying to keep your joints

from further deterioration. NSAIDS or cortisone and pain killers won't do

that. Only DMARDS will. Methotrexate and enbrel are DMARDS. In my opinion,

the enbrel is far easier to handle.

I'm glad you clarified a little because I was a bit put off that any medical

professional would try to " force " a treatment on someone, and I understand a

little better now.

Try the enbrel IF YOU WANT TO (it's not so bad!) and know that you can get

lots of support and info here.

Take care,

[Guest guest]

,

The moderators note should have said " upper RIGHT hand corner " of the

PA messages page for the " Search Archive " box. Sorry,

-- Ron

>

>

> I'm taking methrotrexate right now. I have been having problems

with both shoulders and my right elbow. I have to get injections in

all at times because of the pain. I am a teacher and need to use my

arms to write on the board, etc. Lately, I have been having problems

with my knees, ankles and lower back. My doctor has recommended

Enbrel. I have applied for the waiting list and am waiting to see

what happens. Anyone have any experience with this medication? Let

me know. Thanks!

>

>

> [

[Guest guest]

<Enbrel>

,

I started Enbrel 5/01, stopped MTX 8/01. I have slowly but steadilly

improved to a point where I go for several days at a time without even taking

an NSAID. I feel better than I have in many years. A lot of people have

reported injection site reactions, especially in the beginning, though I have

never had any.

Good luck!

[Guest guest]

Hi :

Hope you don't mind my posting this for Oliver.

Lynn

----------

From: nLilly@...

Reply-

Date: Wed, 7 Nov 2001 09:27:15 -0500 (EST)

Subject: Re: Enbrel Virgin

Dear Jonny,

My Kate (7--severe poly and avascular necrosis of both hips) has been

using Enbrel --started before it was first introduced for kids--and for

us it was our " miracle " drug. She had been on very high doses of

Naprosyn, but had to be taken off due to scarring and bruising of skin,

Was then put on Ibuprofen and Methotrexate and went into a total

remission for about 8 weeks--then was pulled from the Methotrexate due

to extremely high liver counts. We were at our " breaking " point as she

couldn't be put on steroids or certain other drugs due to the AVN of her

hips--so didn't know what we were going to do as she was going right

down hill. She's been on Enbrel for a little over 2 years now and it's

helped to keep things under control. She still will have some bad days

(some is due to hips) but some is due to the fact that the dr. has run

out of meds to give her along with it., but overall she is doing very

well as far as the JRA is concerned.

The only side effects with the Enbrel that I know of to date is a higher

risk of upper respiratory infection,bronchitis and pneaumonia. It

recently was discovered that it can cause lower red blood cell

counts--but as with all meds, that can be watched for with regular labs.

I know Kate got her flu shot as it was recomended by her dr. just

because of the upper respiratory risks with the Enbrel. We were also

told that if she is exposed to chickenpox,strep throat or menengitis to

let her dr. know immediately as they would temporarily stop the Enbrel.

(have already had to due that for 2 weeks due to her class having

chickenpox--but she was fine)

The Enbrel has to be mixed and kept refrigerated so that can be a pain

sometimes. She gets her shot on Monday and Thursday, There are different

sites you can use--arm, stomach, thigh (that's where Kate gets hers)

It's a sub-que shot (under the skin--not in the muscle) Be sure to

" rotate " your shot area a little each time no matter where you give it

as the skin can start to become a little " thicker " after so many times.

I hope this is the " miracle " drug your looking for as it was for us!

Good Luck! (sorry this is so long!)

and Kate

For links to websites about arthritis and JRA, visit:

http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Dear Lynn,

No problem! Just an added " update " . They are starting to see a few new

side effects with the Enbrel. They are considered rare and usually seen

in older patients. There could also be an underlying medical condition

that already exists that causes these side effects. Some of these are:

tuberculosis arthritis

demyelinating disorders

possible lupus (SLE)

The few cases seen involved people over 25 and apparently " cleared up "

after discontinuing the Enbrel therapy. There are numerous possible side

effects with every med that our children take--so it's important to due

labs and keep updated on all potential side effects.

Kate has done great with the Enbrel (wish I could say the same of her

AVN in hips!) Is currently off her Enbrel as she started with a sinus

virus and now has a stomach bug. I know there has been a lot of debate

on the kids getting flu shots--but with our experience--her dr.

recommends it being that she is on Enbrel and while she's had the

sinus/cold viruses (and now a stomach bug) when the flu hit her school

she never did get it. So just something to think about.

and Kate--7 severe poly and AVN

[Guest guest]

Buzz's doctor called yesterday. He said we are just going to move on to Remicaide. We go today to have the T.B. test he has to take first. After that, I guess we will then schedule his appt. His doctor felt like we just couldn't wait any longer on the Enbrel. All last week Buzz could only walk(with help) from the bedroom to the couch and bathroom.

Amy

Enbrel

I got a call from Abbies doctors office today. The nurse wanted to know if I had heard anything from Immunex about Abbies prescription. He was planning to put another kid on Enbrel and hadn't heard anything from us. So after I told her what I knew, she said she would call her drug rep and see if she could get any more info. The upshot is that we will probably give up on Enbrel and move to Remicaide if she can't get any satisfactory answers. We have an appt tomorrow and I will know more then.Christy (Abbie 12, systemic)

[Guest guest]

Dear Amy and Buzz , I hope remicade will give your fella some much deserved relief! Hang in there Buzz ...You too mom ! :):)Tree:):) Enbrel I got a call from Abbies doctors office today. The nurse wanted to know if I had heard anything from Immunex about Abbies prescription. He was planning to put another kid on Enbrel and hadn't heard anything from us. So after I told her what I knew, she said she would call her drug rep and see if she could get any more info. The upshot is that we will probably give up on Enbrel and move to Remicaide if she can't get any satisfactory answers. We have an appt tomorrow and I will know more then.Christy (Abbie 12, systemic)

[Guest guest]

We are now going on to Remicaide. Have to make an appt for next week to get started. The doctor doesn't want to wait for the Enbrel. He said he had several kids that he wanted to start on Enbrel, but just wasn't going to mess with it. So I would appreciate any info on Remicaide. I haven't focused on it at all since we were headed toward the Enbrel.

Christy (Abbie 12, systemic)

[Guest guest]

Amy, I truly emphazie with Buzz I know that feeling, have had to have help a few times me self. Sure will be saying many prayers for Buzz and a great and positive outcome with the Remicade!

warm gentle hugs for U Buzz! hope U get to feeling Better REAL SOON!

Rusty Limbs

On Wed, 6 Mar 2002 07:51:51 -0600 "Amy Luker" <amyluker@...> writes:

Buzz's doctor called yesterday. He said we are just going to move on to Remicaide. We go today to have the T.B. test he has to take first. After that, I guess we will then schedule his appt. His doctor felt like we just couldn't wait any longer on the Enbrel. All last week Buzz could only walk(with help) from the bedroom to the couch and bathroom.

Amy

Enbrel

I got a call from Abbies doctors office today. The nurse wanted to know if I had heard anything from Immunex about Abbies prescription. He was planning to put another kid on Enbrel and hadn't heard anything from us. So after I told her what I knew, she said she would call her drug rep and see if she could get any more info. The upshot is that we will probably give up on Enbrel and move to Remicaide if she can't get any satisfactory answers. We have an appt tomorrow and I will know more then.Christy (Abbie 12, systemic)

[Guest guest]

The Remicaide is a go. We were given insurance approval today, so Abbie has her first treatment on Thursday the 14th. We will have to go to Omaha the first few times so the doctor can monitor her, but if all is well, he is going to find someplace here in Sioux Falls that can administer it. I don't think there will be a problem with that. We enjoy going to Childrens in Omaha, because they are all so nice there, but it will be nice not to have to make a 3 hour trip in bad weather. We usually see the doctor in Sioux City Iowa, which is only about an hour and 15 minutes. He has satellite clinics all over Nebraska and Iowa. What a hard working man.

Is anyone out there planning on going to the national conference in Minneapolis this summer? It is on my list to go, and I would love to meet in person some of you wonderful people.

Christy (Abbie, 12 systemic)

[Guest guest]

Hi Christy,

The waiting can be so hard. I can understand that, as we've been dealing with the issue of human growth hormone for a very long time now. And, still, have not been able to get any definitive answers. Having an alternative plan sounds like it might be a good idea. I hope this works out for Abbie. Good Luck.

Aloha,

Georgina

I got a call from Abbies doctors office today. The nurse wanted to know if I had heard anything from Immunex about Abbies prescription. He was planning to put another kid on Enbrel and hadn't heard anything from us. So after I told her what I knew, she said she would call her drug rep and see if she could get any more info. The upshot is that we will probably give up on Enbrel and move to Remicaide if she can't get any satisfactory answers. We have an appt tomorrow and I will know more then.Christy (Abbie 12, systemic)

[Guest guest]

Hi Amy,

Just wanted to let you know that you and Buzz are in our thoughts. Things have been hard for you guys. I sure do hope that things can set up quickly and that Buzz has a really good response to the Remicade. I hope he's up and about, feeling lots better, quickly. I remember so well those times when was in the very same situation. Don't give up hope. Good things can and do happen. I remember seeing such positive messages from other parents and wondering when on earth Josh would be able to have the kinds of improvements that others spoke about. I even wondered sometimes if maybe he was in some other category that would just have to deal with persistent, severe, JRA symptoms ... always. I never saw the light at the end of the tunnel, because he was doing so poorly for such a long time. Eventually it did get better for us, over time, and I have a feeling that time will come soon for Buzz, too.

Take Care,

Georgina

Buzz's doctor called yesterday. He said we are just going to move on to Remicaide. We go today to have the T.B. test he has to take first. After that, I guess we will then schedule his appt. His doctor felt like we just couldn't wait any longer on the Enbrel. All last week Buzz could only walk(with help) from the bedroom to the couch and bathroom.

Amy

I got a call from Abbies doctors office today. The nurse wanted to know if I had heard anything from Immunex about Abbies prescription. He was planning to put another kid on Enbrel and hadn't heard anything from us. So after I told her what I knew, she said she would call her drug rep and see if she could get any more info. The upshot is that we will probably give up on Enbrel and move to Remicaide if she can't get any satisfactory answers. We have an appt tomorrow and I will know more then.Christy (Abbie 12, systemic)

[Guest guest]

Christy and Abbie..high 5!

I am glad the Remicade is a go! I hope it helps Abbie as much as it has done

Tabitha..The only time Tab had any trouble was when her doctor tried to

raise the dosage she got..which upset her stomach and made her feel funny

but he lowered the dosage back down the next time to what it was originally

and everything was okay.

Tabitha goes to a local hospital here for the day she is to get it..i call

ahead when it is due..which now she gets it every 2 months..if you have a

local doctor, i am sure the rheumy can get in touch with the doctor and let

him/her know what is to be given so it can be monitored that way. We also

get Tabs bloodwork done when she gets Remicade..then the results are sent to

her rheumy and she don't have to be stuck separately. Tab still uses emla

cream to numb where the IV needle is to be put in..To me this is so much

better than injections of Enbrel..i can't handle giving the shots..glad

there are some that can!

Good Luck

karen(tab16.5..poly)

From: gazelle34@...

Reply-

Subject: Re: Enbrel

Date: Fri, 8 Mar 2002 20:56:56 EST

The Remicaide is a go. We were given insurance approval today, so Abbie has

her first treatment on Thursday the 14th. We will have to go to Omaha the

first few times so the doctor can monitor her, but if all is well, he is

going to find someplace here in Sioux Falls that can administer it. I don't

think there will be a problem with that. We enjoy going to Childrens in

Omaha, because they are all so nice there, but it will be nice not to have

to

make a 3 hour trip in bad weather. We usually see the doctor in Sioux City

Iowa, which is only about an hour and 15 minutes. He has satellite clinics

all over Nebraska and Iowa. What a hard working man.

Is anyone out there planning on going to the national conference in

Minneapolis this summer? It is on my list to go, and I would love to meet in

person some of you wonderful people.

Christy (Abbie, 12 systemic)

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

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[Guest guest]

Hello Amy and Buzz..

Sorry to hear Buzz hasn't been feeling well. Good luck with the Remicade..it

has helped Tabitha tremendously! Yall are in my thoughts and prayers..hang

in there!

Good luck

karen(tab16.5..poly)

From: " Amy Luker " <amyluker@...>

Reply-

< >

Subject: Re: Enbrel

Date: Wed, 6 Mar 2002 07:51:51 -0600

Buzz's doctor called yesterday. He said we are just going to move on to

Remicaide. We go today to have the T.B. test he has to take first. After

that, I guess we will then schedule his appt. His doctor felt like we just

couldn't wait any longer on the Enbrel. All last week Buzz could only

walk(with help) from the bedroom to the couch and bathroom.

Amy

Enbrel

I got a call from Abbies doctors office today. The nurse wanted to know

if I had heard anything from Immunex about Abbies prescription. He was

planning to put another kid on Enbrel and hadn't heard anything from us. So

after I told her what I knew, she said she would call her drug rep and see

if she could get any more info. The upshot is that we will probably give up

on Enbrel and move to Remicaide if she can't get any satisfactory answers.

We have an appt tomorrow and I will know more then.

Christy (Abbie 12, systemic)

[Guest guest]

....and, at my recent visit to Dr. Whitman in NJ, he pointed out that the

enbrel and enbrel type drugs, seem to be showing up as causative (Hodgkin's

Lymphoma) and other cancers. They shut down the body's ability to muster

the agents necessary to fight back infections and cancers.

Sbcona@... wrote:

Hi

everyone,

I don't want to be an alarmist,but I felt like you should know this.

My sister-in-

law's Mother-in

law died a couple of weeks ago of an infection that engulfed her body

in a matter

of days. She was on Enbrel, one of the first,as she was a participant

in the double blind studies in Boston. Prior to the Enbrel,she had

been on Methotrexate

for a number

of years. I highly doubt that the manufacturers will let the public

know about this incident. We all know that these hard line drugs

wreak havoc on our immune system...which in her case she was not able to

detect the infection until it was too late. She noticed a swollen

knee over the weekend,and presumed it was just a flare. By Monday,her

leg was double it's size and she was taken to the ER where

they discovered

the infection had killed all the tissue to her hip. They amputated

her leg only to discover the next day that it had spread to her abdomen.

She died that day. This hits home for many of us,as I too am on Enbrel

and I know many of you are. I am determined to get off of it as soon

as possible. There are probably other cases like this that are not made

public knowledge...but please be careful. susan

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Thank you for the message. Sorry I have not thanked you before now, we went to visit my sister for a few days in Arkansas. Your words of encouragement mean alot to me. Thank you again.

Amy

Re: Enbrel

Hi Amy,

Just wanted to let you know that you and Buzz are in our thoughts. Things have been hard for you guys. I sure do hope that things can set up quickly and that Buzz has a really good response to the Remicade. I hope he's up and about, feeling lots better, quickly. I remember so well those times when was in the very same situation. Don't give up hope. Good things can and do happen. I remember seeing such positive messages from other parents and wondering when on earth Josh would be able to have the kinds of improvements that others spoke about. I even wondered sometimes if maybe he was in some other category that would just have to deal with persistent, severe, JRA symptoms ... always. I never saw the light at the end of the tunnel, because he was doing so poorly for such a long time. Eventually it did get better for us, over time, and I have a feeling that time will come soon for Buzz, too.

Take Care,

Georgina

Buzz's doctor called yesterday. He said we are just going to move on to Remicaide. We go today to have the T.B. test he has to take first. After that, I guess we will then schedule his appt. His doctor felt like we just couldn't wait any longer on the Enbrel. All last week Buzz could only walk(with help) from the bedroom to the couch and bathroom.

Amy

I got a call from Abbies doctors office today. The nurse wanted to know if I had heard anything from Immunex about Abbies prescription. He was planning to put another kid on Enbrel and hadn't heard anything from us. So after I told her what I knew, she said she would call her drug rep and see if she could get any more info. The upshot is that we will probably give up on Enbrel and move to Remicaide if she can't get any satisfactory answers. We have an appt tomorrow and I will know more then.Christy (Abbie 12, systemic)

[Guest guest]

I have good news for you Barney, NICE (I dont't know the expansion) in the

UK announced on 22 March 2002 that Enbrel and Remicade would be available on

prescription on the NHS in the UK. This followed a " NICECampaign " conducted

in the UK similar to what we are doing here in Australia. For all the

information, the UK campaign web site is www.nicecampaign.org.uk Here you

will find all the information you require. I had earlier been in touch with

Ruth Arnold, founder of the campaign there to see whether we had campaign

strategies to exchange. Perhaps this success will further strengthen our

case in Australia as our two medical systems are fairly similar. It is

soooo frustrating as these biologics become increasingly available at

subsidized cost throughout the world and we in Australia are meeting with

obstacles all the way !!!

Regards, Gordon

[ ] ENBREL

> I was wondering if any of the UK members on the list know anything about

the availability of Enbrel in the UK.I've been on mtx for three years and

I'm concerned about the effect it's having on my liver.All my blood tests

have been clear but it still worries me.Also could anybody tell my how

Enbrel compares to mtx i.e.,effectiveness,side effects etc.I must admit the

mtx has helped my PA but as I've said ,it concerns me being on it for a

prolonged period.

> thanks , Barney

>

>

>

[Guest guest]

Ok - I'm a bit confused now. I just talked to my usual place where I call

for Enbrel injections for shipment and they acted like everything was fine.

Melisa there even said " don't let the letter scare you - we just are having

to keep careful track. You'll get your shipment "

So now, I don't really know what to think!!

She told me " there is no more refills left " and I panicked!! I told her " what

do I do?!?! " and she said, " well, I can just call your rheumy for a new

script " DUH!!!!! I thought she meant there's no more DRUG left!! LOL

I think paranoia has set in!!

Anyone else having the experience that they are acting like there is no

problem?

[Guest guest]

Our scrip isnt due for another three weeks, but paranoia has set in with me

too and I already put in for the refill. I am keeping my fingers crossed

because my husband has had two doses of Enbrel and is now off MTX and

prednisone already. I will let yall know if we have any problems getting the

refill.

Ellie

[Guest guest]

> Ok - I'm a bit confused now. I just talked to my usual place where

I call

> for Enbrel injections for shipment and they acted like everything

was fine>........ Anyone else having the experience that they are

acting like there is no

> problem?

>

I contacted my pharmacy on 1 April for my refill. The pharmacy

wasn't really up on the latest problem, and I took a copy of my

letter to them. I was a little early in requesting my refill (by a

couple of days), so the pharmacy called the insurance company--no

problem. Then the pharmacy had to place my order with the

manufacturer. The pharmacy was told by the Enbrel people it could be

between 2 days to 2 weeks!!

I guess it is time for me to start rationing out my Enbrel.

Sandy

[Guest guest]

My Pharmacy and their source swear there isn't a problem. I'll find out

tomorrow. My Enbrel was ordered yesterday and they expect it to be delivered

tomorrow. We'll see. Becky

Re: [ ] Enbrel

Ok - I'm a bit confused now. I just talked to my usual place where I call

for Enbrel injections for shipment and they acted like everything was fine.

Melisa there even said " don't let the letter scare you - we just are having

to keep careful track. You'll get your shipment "

So now, I don't really know what to think!!

She told me " there is no more refills left " and I panicked!! I told her " what

do I do?!?! " and she said, " well, I can just call your rheumy for a new

script " DUH!!!!! I thought she meant there's no more DRUG left!! LOL

I think paranoia has set in!!

Anyone else having the experience that they are acting like there is no

problem?

[Guest guest]

Well I just returned from the pharmacy. They had just got off the phone with

their supplier..... They won't be able to ship my Enbrel until April 25th. I

guess I'll be going to one dose a week to get through to the end of the month.

Becky

Re: [ ] Enbrel

Ok - I'm a bit confused now. I just talked to my usual place where I call

for Enbrel injections for shipment and they acted like everything was fine.

Melisa there even said " don't let the letter scare you - we just are having

to keep careful track. You'll get your shipment "

So now, I don't really know what to think!!

She told me " there is no more refills left " and I panicked!! I told her

" what

do I do?!?! " and she said, " well, I can just call your rheumy for a new

script " DUH!!!!! I thought she meant there's no more DRUG left!! LOL

I think paranoia has set in!!

Anyone else having the experience that they are acting like there is no

problem?

[Guest guest]

I'm in the same situation. They told me 3 weeks from April 1st. R.E.

Re: [ ] Enbrel

Ok - I'm a bit confused now. I just talked to my usual place where I call

for Enbrel injections for shipment and they acted like everything was

fine.

Melisa there even said " don't let the letter scare you - we just are

having

to keep careful track. You'll get your shipment "

So now, I don't really know what to think!!

She told me " there is no more refills left " and I panicked!! I told her

" what

do I do?!?! " and she said, " well, I can just call your rheumy for a new

script " DUH!!!!! I thought she meant there's no more DRUG left!! LOL

I think paranoia has set in!!

Anyone else having the experience that they are acting like there is no

problem?