Enbrel

[Guest guest]

Becky,

I've never been on enbrel but when I was having a crippling flare up

last winter, my dr first mentioned it to prepare me if i ever needed

it. I've been in the hospital a few times with infections, but my rd

would have wanted to hold off the enbrel to use it as a last resort

anyway. he's a great rd and very aggressive in fighting my pa (my

last rd was worthless) I don't know how old you are, but i'm 29 and

he didn't want to start me on such a " dangerous " drug at such

a " young " age.

Enbrel has some pretty heavy side affects but I also understand that

it does wonders. You usually take it in addition to the mtx. The

enbrel is injected twice a week.

Also, on a purely cold financial note, I looked into it with my

hmo.... good luck!!

But seriously, good luck. I resisted taking the mtx for a while

also. If the alternative is worse do what ya gotta do. with me, the

mtx makes me functional, but the pa is still very active. i would

imagine that yours is as well.

rereading this post, i see its a bit undecided. bottom line, i would

take it if i needed to, but only if i needed to.

hope this helps some, its a very tough decision.

BE WELL!!! Ari

> Well, I head over to Salt Lake to see my Dr. on Friday. I believe

I will be

> making a change to Enbrel. Does anyone have thoughts or advice on

this. I

> really don't want to go off the MTX, do they usually add the Enbrel

and stay

> on the MTX? I take 20mgs a week. I am going into my busy season

at work,

> and can't afford any grief from my body. I'm just wondering if

this is a

> good time to make a change. Any thoughts?

>

> Thanks, Becky

[Guest guest]

Hey Becky, I have not used the enbrel, but was wondering why

you're changing if the MTX is working for you? Is the MTX causing

problems with your blood tests and/or liver? Randy in Va.

Becky Raine wrote:

> Well, I head over to Salt Lake to see my Dr. on Friday. I believe I will be

> making a change to Enbrel. Does anyone have thoughts or advice on this. I

> really don't want to go off the MTX, do they usually add the Enbrel and stay

> on the MTX? I take 20mgs a week. I am going into my busy season at work,

> and can't afford any grief from my body. I'm just wondering if this is a

> good time to make a change. Any thoughts?

>

> Thanks, Becky

>

>

> Please visit our new web page at:

> http://www.wpunj.edu/icip/pa

>

> This past year had moderated a chat on arthritis at

www.about.com on Thursday evenings and hopes to start up doing so again soon- we

will keep you posted! Meanwhile, if anyone would like to start a weekly chat on

egroups, please contact or . Thanks

[Guest guest]

Hi Becky, I am also on MTX and Enbrel. I had to switch to a new Rheumy and this one started cutting my MTX dosage since I was also recently put on Enbrel. He didn't want me on both if I could get by with just Enbrel. He said that most people do fine with Enbrel alone. I have seen that it is taking longer to work than MTX but is now showing some help as far as PA, it doesn't work as well on the P as MTX. I go back to the Rheumy in December and will see what he wants to do from there. My MTX was cut from 15mg per week to 7.5mg. I also didn't want to give it up. I literally felt like I was going to breakout in severe P again just at the thought of decreasing it. I do have some now but was clear the last time he saw me. Cassie

[Guest guest]

Hi! I think I at last have the Enbrel situation figured out. You have to

register with the Enbrel Enrollment Program to keep getting Enbrel

after the first of the year. You do this by calling 1-888-436-2735.

It is a computer generated question and answer session. You

need to provide: name, address, phone numbers, date of birth

and if you are currently using Enbrel. They in turn send you an

enrollment package which you are to receive in 7 - 10 days. You

must return this package to be registered. They give you a reference

number for any future communication. This information was given

to me by out Pharmacist. He was contacted yesterday. We also

went to Robbie's rheumy today. They gave us a question and answer

sheet. It says that there will be a temporary shortage because Enbrel is

complex to manufacture. The new plants to make it are started, but

not finished. After you send in your enrollment package, they send you

an Enrollment card number, which you must have to get an Rx for Enbrel

filled.

I am hearing it is a first come, first serve situation. The lower your

enrollment

card number, the more likely you will get Enbrel. If your child is an Enbrel

user, your should get registered as soon as you can.

Thanks, Jana

[Guest guest]

Hi Diane.

To make a long story short....I LOVE ENBREL AND THE WAY IT HAS GIVEN ME BACK

MY LIFE!

My advice? Definately try it and I hope it works as well for you- 'nuf said.

Rivky :-)

[Guest guest]

Just a curious question. Why all the registering and manufacturing problem

with Enbrel? I changed my email name and thinking I may have missed a letter

or two.

Thanks,

Sandi A. (Ashli's mom)

[Guest guest]

Sandi-

Georgina discovered that there is a serious shortage of Enbrel. I checked

with 's doctor and he confirmed this is true. They're building two new

plants so they can produce enough to meet demand. As of January, they will

not be taking new orders. If Ashli takes Enbrel, you need to get on a list

so you can keep receiving it.

Diane

[Guest guest]

In a message dated 11/17/2000 9:36:31 AM Pacific Standard Time,

mommytme2@... writes:

> Just a curious question. Why all the registering and manufacturing problem

> with Enbrel? I changed my email name and thinking I may have missed a

> letter

> or two.

>

> Thanks,

>

Sandi,

called Enbrel resterday to register and asked what was going on. She

was tols that there was not a shortage of Enbrel, just the demand is more

than the supply :) In any case, her registration card is in the mail

Marcie, s Mom

[Guest guest]

Thanks for this update, Jana.

~Georgina

JANABECKER@... wrote:

>

> Hi! I think I at last have the Enbrel situation figured out. You have to

> register with the Enbrel Enrollment Program to keep getting Enbrel

> after the first of the year. You do this by calling 1-888-436-2735.

> It is a computer generated question and answer session. You

> need to provide: name, address, phone numbers, date of birth

> and if you are currently using Enbrel. They in turn send you an

> enrollment package which you are to receive in 7 - 10 days. You

> must return this package to be registered. They give you a reference

> number for any future communication. This information was given

> to me by out Pharmacist. He was contacted yesterday. We also

> went to Robbie's rheumy today. They gave us a question and answer

> sheet. It says that there will be a temporary shortage because Enbrel is

> complex to manufacture. The new plants to make it are started, but

> not finished. After you send in your enrollment package, they send you

> an Enrollment card number, which you must have to get an Rx for Enbrel

> filled.

>

> I am hearing it is a first come, first serve situation. The lower your

> enrollment

> card number, the more likely you will get Enbrel. If your child is an Enbrel

> user, your should get registered as soon as you can.

>

> Thanks, Jana

[Guest guest]

Hi Riann.

I think you will find absolutely everything you want to know about

Enbrel at http://www.enbrelinfo.com/.

Click around the site a bit and you will see product information,

frequently asked questions, scientific explanations for how and why

the drug works and even prescribing information and details about

possible side-effects.

The drug companies post sites likes these for each of the popular

drugs. I find them invaluable. The sites are easy to find by doing

a simple search using the name of the drug (in this case Enbrel).

Hope you find what you're looking for.

Gayle

> Hi All

>

> I'm from South Africa, and we do not get Enbrel here. Can anybody

> please tell what the substances (what Enbrel are made of) of

> Enbrel is, so that my Doctor can try to help me.I only use MTX

> 2,5mg per day.

>

> Thanks

>

> Riaan Botha

[Guest guest]

Rian,

Enbrel is not something that can be replaced by anything else - it's pretty

new and targets arthritis in a different way from MTX. You can go to

www.enbrel.com to learn more about it. Maybe you can get your doctor to

order it.

Good luck -

Sara

[ ] Enbrel

Hi All

I'm from South Africa, and we do not get Enbrel here. Can anybody please

tell what the substances (what Enbrel are made of) of Enbrel is, so that my

Doctor can try to help me.I only use MTX 2,5mg per day.

Thanks

Riaan Botha

[Guest guest]

Thanks for your response

Riaan Botha

[ ] Enbrel

>

>

> Hi All

>

> I'm from South Africa, and we do not get Enbrel here. Can anybody please

> tell what the substances (what Enbrel are made of) of Enbrel is, so that

my

> Doctor can try to help me.I only use MTX 2,5mg per day.

>

>

> Thanks

>

> Riaan Botha

>

>

>

>

>

>

[Guest guest]

hi sinead

yes i to agree enbrel is great. the only down side i can see is the doing the

injections. i hate that. i've been on it for a few months now. i had to stop

for a week due to an ear infection. and yes unfortunately the pain came right

back.

but i'm just enlying having my life back.

good luck

rosemary

[Guest guest]

I have just started the enbrel a few weeks ago. I haven't had any side effects so far. I must be doing a little better because my husband commented on how I just bent down and picked something up and I was ok...So hopefully it is doing it's magic already! The only down side I had was the needles and having to poke myself but I am getting over that quickly since I have to do the enbrel and the mtx by injection by myself.

D in MN

[Guest guest]

I would like to know just what this is? I have never heard of it before this group. Thanks and God bless, BJ

[ ] Enbrel

Hi all. I've seen so many positive things on here about Enbrel. Those of you who are on it seem to see dramatic results shortly after starting. What is the down side? (Other than that it's hard to get right now) Are there any side effects? Does it stop working once you stop taking the injections?Thanks for the info!Sinead_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

In a message dated 03/07/2001 3:32:59 PM Eastern Standard Time,

sdcreate@... writes:

<< Anyway, I told the Enbrel people that they were misleading people. >>

- I understand and sympathize with you. It isn't fair. But I do think

I read that the problem is the Enbrel company's factory can't keep up with

demand and they are building new facilities. Hopefully it won't be too long.

Did you talk to your rheumy about maybe trying Remicade? Maybe that would

help you as much as the Enbrel seemed to.

Take care,

[Guest guest]

Dear ,

I am so sorry for your fustration and your pain. I understand and it all sounds so crazy and bizzare to me. It just doesn't make sence to me. If there is such a demand for it then they need to come up with a solution. You vent here anytime you feel you need to. I will keep praying for you. a

[ ] Enbrel

Hi everyone, I had a very frustrating morning and needed to vent a little. Last month, I got to start on the Enbrel program. My pharmacist was being kind and said that he had a few extra boxes so he would let me have them since I had my enrollment card. Well, when I went to refill my prescription, I was told that 'no' I couldn't have it because I was one of the people on a waiting list! I was very upset, especially since I was told I was enrolled and have the card, etc...But even more so because I have been poking myself with this stuff for a month already and have to abruptly quit. They told me that I shouldn't have any problem, just that my pains I had before will be returning. When I asked how long was the wait, they said they had no idea. I was so angry they made me cry, and I hate that... Anyway, I told the Enbrel people that they were misleading people. Why would they have a rep go to all the clinics and push the stuff at the rheumy's if the drug wasn't even going to be available? I have an appointment in the morning, thank goodness so I can let me rheumy know what happened. I am just so upset over the whole thing and I am sorry if I poured out at all of you, I just thought you, of all people, would know what I am going through. Thanks... D in MN

[Guest guest]

, thanks for the new info, that is weird however because I just read an

article on still's and enbrel saying just the opposite, unless they are

talking about adult still's, but honestly I dont think there is much

difference there besides the age. And I do know that enbrel has worked

great for so many of us with AOSD.

Visit the International Still's Disease Foundation Website

http://www.stillsdisease.org

[Guest guest]

Hi ,

I would love to read the article you mention, if you can find it. The way I see

it, Enbrel is another promising med that works really well for some, not at all

for others. Added to another DMARD it works a bit better than by itself. When

Josh saw his rheumatologist on Friday she said that when used on children with

systemic JRA, the results have not been great. While many with poly and pauci

JRA have a very good response, that hasn't been the case for most children with

prominent systemic disease features. I wonder how the Enbrel/MTX pediatric study

is going, in CA? If anyone hears anything about that, I would be very interested

to learn more.

Thanks,

Georgina

, thanks for the new info, that is weird however because I just read an

article on still's and enbrel saying just the opposite, unless they are

talking about adult still's, but honestly I dont think there is much

difference there besides the age. And I do know that enbrel has worked

great for so many of us with AOSD.

[Guest guest]

In addition to the report in the archives I talked with the Dr's at UCLA and

they too supported these findings. About 5 months ago we had several here

on JRA list and several on the Stills list that were not experiencing

positive results. I know that it is all microbiology and who truly knows

what is going on down there. But they did specify a different cytokine in

Stills vs the others.

Never know, tomorrow is another day and another cure.

Re: enbrel

> , thanks for the new info, that is weird however because I just read

an

> article on still's and enbrel saying just the opposite, unless they are

> talking about adult still's, but honestly I dont think there is much

> difference there besides the age. And I do know that enbrel has worked

> great for so many of us with AOSD.

>

>

>

> Visit the International Still's Disease Foundation Website

> http://www.stillsdisease.org

>

>

>

>

> To manage your subscription settings, please visit:

>

>

> For links to websites about JRA:

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

>

>

[Guest guest]

Enbrel without insurance runs over $1000.00 a month if just taking it twice a week. I am assuming that Avara is a tablet (I haven't had that one yet)?

Enbrel has to be injected. I have just been recently bumped up to three times a week with the Enbrel; he doesn't want to go up any further with my methotrexate because I have such a low white count. Does anyone else have a low white count?

D in MN

[Guest guest]

> How does Enbrel rate to Arava? Can a comparison be made? Should one

> consider taking one before the other? How much does each cost? I

> heard that Arava is about $300/month without insurance.

Ante, This is Dena. I have been on both Enbrel and Arava (in fact, I

was on both at the same time and on MTX.)My experience with Arava has

been very good. I know that my Rhumie thought that Arava would be the

drug to use first before Enbrel.I had been on Mtx(injections-pills

were not helpful and made me sick) when my P got really bad and my

entire trunk was covered in Guttate Psoriasis he added Arava. The

first 3 days you have to take 100 mgs or so and I experienced

terrible headaches, but after about 2 or 3 months I could see that my

Guttate P was trying to improve. I eventually figured out that I

could take 10mg (instead of the normal 20mg) and still reap the

benefits without the headache-for the most part. My insurance pays so

I'm not sure of the cost. Enbrel was about $4000.00 for 3 months

worth. I had to go off because my insurance would not pay. I really

didn't notice a dramatic improvement on the Enbrel BUT about 3 weeks

after I stopped it I had a noticable increase in overall PAIN. Arava

is much easier for me and you don't have to deal with the injections

(as with Enbrel) which can be red,itchy and bruised. I may consider

trying Enbrel again some day if my insurance decides to pay. I wonder

if it really was helping me more than I knew as it was subtle at

first, BUT as I said when I went off of it I definately NOTICED the

increase in pain. Remember everyone is going to respond differently

it seems. Hope that helped some. Everyone be happy!!! Dena

[Guest guest]

I have been on Enbrel for over a year. I have been on the AP for 11 years.

I am doing very well right now and lead a very " normal " life. I also try to

follow the suggested diet and exercise regularly.

[Guest guest]

> I am now on the approved list for Enbrel. Please let me know if

anyone has

> any comments,good or bad, about this drug

> I have been on Enbrel for a year now, and it has really helped me.

Some days I could barely walk, my knees and ankles were so swollen.

I noticed a big improvement after the first injection. It helps alot

with my fatigue also. It was trickly getting used to self injecting

twice a week....I still don't like doing it, but it has really made a

difference for me. Good luck...Kathy

>

>

[Guest guest]

In a message dated 6/9/01 3:16:14 AM Central Daylight Time,

writes:

> Enbrel

I started taking enbrel a month ago after 3 months into a flare and several

increases in MTX doses . It had started to improve a " little " , but I was

still really miserable. My hand is nearly back to normal now, and I am

feeling really well. I am starting to wean off the MTX now and hope that all

will stay good on the enbrel and nsaids. I still have some stiffness and

still have the hip pain that I have had forever ( coming from the spine) but

my hands are fully functional (though weaker and not as coordinated) again.

So far, so good, I have to say I am really happy with it.