Enbrel

[Guest guest]

In a message dated 1/27/03 1:06:48 PM, jturner@... writes:

<< Janet in San Francisco >>

Just have your doctor write you down as an RA sufferer, that's what mine

does when he runs into hurdles like that.

[Guest guest]

In a message dated 1/28/03 9:11:33 AM Eastern Standard Time,

caringpro@... writes:

> What does RA exactly stand for? jOY

>

Rheumatoid Arthritis

[Guest guest]

What does RA exactly stand for? jOY

>

> In a message dated 1/27/03 1:06:48 PM, jturner@p... writes:

>

> << Janet in San Francisco >>

>

> Just have your doctor write you down as an RA sufferer, that's

what mine

> does when he runs into hurdles like that.

[Guest guest]

In a message dated 1/27/03 7:57:00 PM, mctpcd@... writes:

<< hope enbrel gets approved for ReA. >> Pat

I have taken enbrel, I'm on remicade and am trying to get on Humira and

none of these have been approved for ReA. I have symptoms that could be RA,

ReA, Lupus, and most of the other spondaloararthopities(sp) in some form or

another. What I do have is ReA, but we all know how they over lap with the

other's in this group.

Once your on the drug of choice there is no Drug Police coming around

checking to see if you have the proper disease to match the drug your taking!

Get a new doctor until you get what you want. Because if your waiting for

the FDA to approve any of these drugs for ReA, I'm afraid you'll be waiting a

long time.

[Guest guest]

Hi Janet,

My doctore got enbrel for my AS without lying. I even told the

folks at enbrel that I have AS. It is working very well so far for me.

I have dropped from 8 mg of prednisone to 4 mg. I am dropping 1 mg a

week....hoping to get to 0 in 4 more weeks. I feel the same so far as

if I were on 8 mg. of prednisone. I will stop the vioxx after all

prednisone is stopped if things continue as they have. Hope this helps

you to get enbrel. Debby

[Guest guest]

Thanks, Debby. You give me hope. I'll be interested to hear how you do,

because I am also on prednisone and Vioxx and want to get on Enbrel in order

to reduce my usage of both. I hope Enbrel works really well for you.

Janet

[Guest guest]

> I am new to the group and would like to know if anyone has used

> enbrel and how quickly did it work. Thank you

>

Hi there!

I'm in my third week with Enbrel. I noticed SOME improvement right

away. Of course, everyone is different. But for me, the day after

my first shot, my sausage finger was down to normal size. Sometime

during the first week I began to notice that I was bouncing out of

bed and going about my morning routine without any morning

stiffness. That's a really nice change! I frequently forget to

take my Vioxx in the morning, that's how good I've been feeling. Of

course my sore feet eventually remind me to take it. I still have

some aches and pains, including one in the ball of my left foot that

I really would love to get rid of, but so far nothing has touched.

I am noticing with Enbrel that the pain there has a rounder feel to

it. It's not a sharp pain now.

I am hoping that this is just the start of a longer curve of

improvement, and my doctor is hoping I can wean down to 7.5 mgs of

mtx--just enough to keep my antibodies from rejecting the Enbrel,

is, I think, how he described that situation.

When I saw him this week, his pep talk to me was not on how this was

a miracle drug, but on how much safer it appeared to be compared

with methotrexate.

I hope this report helps!

Kathy

[Guest guest]

I went to my Dr. today for the first injection... and chickened out. Kathy, how

old are you, how long have you had PA, and do you have severe pain or any

deformity? I am so scared since I have no X-ray deformity as of yet that I am

starting this too soon. (You can read my e-mail from yesterday about that.) I

just don't know at what point to start on this. My Enbrel expires in August, so

I have until then to figure it out... but I am sure I will probably break and

use it before then. My ankel and feet hurt pretty bad. You mentioned the ball of

your feet... that comes and goes for me, but BOY do I hate it! That is the most

horrible place to have pain!My big toes are pretty bad too.

In a message dated 1/30/2003 11:06:17 AM Eastern Standard Time,

katiekind@... writes:

> When I saw him this week, his pep talk to me was not on how this was

> a miracle drug, but on how much safer it appeared to be

> compared

> with methotrexate.

>

> I hope this report helps!

>

> Kathy

[Guest guest]

My podiatrist solved the heel and ball of the foot problems. You need ARCH

support. He made me a simple slip on and off pad that has made all the

difference in the world. I might not wear it for months--but the minute any

part of a foot hurts, I slip that on and wear it day and night. Then I am

fine until the next time I do something to bring on the pain.

Ks Di

[Guest guest]

> I went to my Dr. today for the first injection... and chickened

out. Kathy, how old are you, how long have you had PA, and do you

have severe pain or any deformity?

Hi pookiegut,

I'm 44, I have had PA for about 3 years, and psoriasis since my mid-

twenties. I think I first noticed it after a Caesarian birth when I

was...27 or so. As to severity--it would be severe if I weren't on

so many things! I let it get pretty bad before I agreed to start on

stuff. Part of me argued that if I stayed off my feet, and didn't

do much, I would be ok. I spent a lot of time at my computer, and

my husband took on more and more of the work of running our

household. Another part of me could tell I was sliding into

depression, and I could seriously see wheelchair time approaching.

I had already used one extensively on a family vacation we took.

When I went to my next scheduled rheumatologist appointment, he took

one look at me and told me the time had come for the DMARDS.

Unlike you, I already had three precious children, and I have to

admit to you, I feel very grateful to not have to be weighing out in

my mind whether I might be trading future children for disease

control. That seems like an impossible choice to make! I'm also

grateful that I had them before I had this disease. Chasing active

toddlers takes lots of physical energy.

How do you feel about methotrexate? Although it has side effects,

it's been around so long that they know what the side effects are

and how to watch for them. And apparently many young people who

take it, do go on to have healthy children (by taking a break from

the drug). Perhaps you could use mtx for a few years while Enbrel

(and similar biologics) establish more of a track record?

Like you, I do worry a little about running through my treatment

options--and I'd worry about that even more if I were your age. As

a Christian I trust that I'm not in this adventure alone, and no

matter what, I won't be facing any eventuality alone. That's

comforting when my fears run away with my imagination.

I am impressed with your carefulness in trying to make your own

health care decisions. Good for you!

Take care,

Kathy

[Guest guest]

Hi Kathy,

I have refused MTX for years. It was the ONLY drugs Dr.'s were willing to give

me at first, and I refused it every time. I know several people that I see

everyday who have been on long term MTX, and they have never been able to stop

using it... that scares me. Even more so, it never seemed to stop their

deformities from happening. I can deal with the pain, it's the deformities I

want to STOP! The best thing to use for that is biologics. It has the best #'s

with even it's short history when it comes to stopping progression of the

disease. MTX does not stop the progression, but can slow it down. It also is

much harder on the body, with a higher % of side effects than Enbrel, which is

why Enbrel has been my choice all along. (I just wasn't able to get it when I

wanted it last year, due to the waiting list) I take Sulfasalazine now, which

takes the edge of the pain... and Celebrex too. I am still amazed that after 5

years of having this and 4 Dr.'s, only ONE DR. gave me options besides MTX.

There are so many more easier drugs on the body out there to try before going on

something so severe. Enbrel is severe... because it has had rare fatal side

effects, and is the unknown... but there are other drugs that I think people

should try that are EASY drugs for the body, before trying things that are

poisonous to the body. I know Enbrel is a RISK, but it is also a drug that I

personally feel through research of my own works well WITH the body, instead of

against it like MTX seems to do. I just get so angry that every Rheum seems to

immediately go for MTX, just because it is tried and true. There are so many

other options before going that severe. I have also found that people I know on

MTX have a serious reserge of the arthritis as soon as they try to go off of

MTX... and it eventually stops working... as most drugs do. It's all pretty

scary. I learned a lot about meds fromo " Strong Women-and Men Beat Arthritis " by

Dr. Miriam . She lists them as easy on body, and hard on the body, and

gives reasons why.

Thanks for chatting with me about this!

In a message dated 1/31/2003 9:49:57 AM Eastern Standard Time,

katiekind@... writes:

> How do you feel about methotrexate? Although it has side effects,

> it's been around so long that they know what the side effects are

> and how to watch for them. And apparently many young people who

> take it, do go on to have healthy children (by taking a break from

> the drug). Perhaps you could use mtx for a few years while Enbrel

> (and similar biologics) establish more of a track record?

>

[Guest guest]

I sure hope so! I will cross my fingers and say my prayers for you!

[Guest guest]

>which is why Enbrel has been my choice all along.

It sounds like you're working through your options very methodically

and carefully. Good for you!

> Thanks for chatting with me about this!

You're welcome! I know from personal experience that it is sure

nice to have someone to talk to whose eyes don't glaze over when you

start talking about methotrexate-this and sulfasalazine-that, isn't

it! :-)

Good luck with your decision!

I had my 6th injection yesterday and today my foot is feeling better-

-the best it's been in a long while. Hurray!!! Maybe my husband

and I will be able to take walks together come springtime!

Warmly,

Kathy

[Guest guest]

Hi ,

Yes, Enbrel was a challenge for my doctor. I had to call a special number,

then they sent me a form for the doctor to fill out, the doctor filled it out

and sent it in and then FINALLY, after a FEW months, they issued me an

Enbrel, authorization number. Then,,,,,,,,,,,,,,,,it took fights to have my

insurance company approve it. Back to my doctor who had to fill out more

forms and tell them why I needed it. It was a LONG hassle but finally I was

approved and then had to wait for Enbrel to be sent to my pharmacy as there

was a shortage then. I've mentioned this before but I was so eager to start

it that I called the company head direct and within a couple of days my

pharmacy called and said they had it for me. I don't know if all those steps

are still necessary but I would sure start with getting an authorization

number to get the ball rolling. When I look back at all the anguish I went

through it makes me laugh but it sure wasn't funny then. I'm sure it must be

an easier road now. Hope, Hope, Hope for your sake.

Yes...Yes...Yes....Enbrel is an injection...... ( I dread Monday and

Thursdays but almost everyone else is doing fine with " poking " themselves.

I've never been strong around needles.

Keep us informed on your progress.

xxoo

Ca. Carmen

[Guest guest]

I hate the enbrel needles that comes with the kit, most of the time they are

dull or the bottle dulls them even if you hit the center perfectly, amgen

has had lots of complaints about the needles, and what is up with the size,

I asked my pharmacist if I could switch out and use smaller needles, like

diabetic, 28 gauge I think is what I got and he said yes and they dont hurt

at all, I use the enbrel needle to mix the solution but then use the other

needle to draw up the solution. I did wonder if possibly enbrel uses a

larger needle because the molecules are so large, but that may not matter

when it's mixed. I need to ask some more about that and get second and

thrid opinions on that. As long as you dont lose the effectiveness the

shorter, thinner needles dont hurt.

GO DAWGS !!!!!

[Guest guest]

where do you live? I live in Oregon, and it is $1500 a month. Lucky I have

insurance! EFD

[Guest guest]

Janet,

I recall the initial apprhension. I started in November 1999. Its a

piece of cake. Initially you just have to get used to it. in a couple of weks

it becomes second nature.I went jogging yesterday!!!! could barely walk

before. Hope you do as well.

pat in pittsburgh

[Guest guest]

Hi,

You will be amazed! Giving the injection is so easy and does NOT

hurt at all. In fact, since I live 3 hours from my doc, the nurse next

door showed me and I gave my first one myself. You will have no pain

and that surprised me too. Congrats and here's hoping it works better

for you than me. I am just finishing up my third month's worth but

since it did not allow me to get off the prednisone, we are

discontinuing it after March. : ( Best of luck. Debby

[Guest guest]

I believe that most rheumatologists give it eight weeks before they abandon

treatment with Enbrel all together. Therefore, two weeks is too soon to tell

if it will work for you. Good Luck and god speed!!

S.

group founder

[Guest guest]

Thanks so much Faye and thanks to everyone who's responded to my questions

about Enbrel. Faye, I will print out your e-mail and refer to it. Hearing

from those of you who have survived learning how to give yourself injections

of Enbrel has made me much less nervous about it. I go in this afternoon to

get the instruction. I'll let you all know how it goes. Thanks again,

you're all a big help to me.

Love,

Janet in SF

Reactive Arthritis since 1973; diagnosed 1997

[Guest guest]

I have been on Enbrel as long as it has been available

and it has worked miracles for me..I have found thru

the 4 1/2 years that our diet will influence the

arthritis activity.When I started it I had been on a

diet rich in omega 3s ,salmon,fish oil,fresh veggies

lots of fruit,no dairy ,no red meats, etc and that

alone gave me some relief so when I started the Enbrel

it worked very fast and effectively.Over the next year

I weaned off everything else I was

taking.Prednisone,pain killers almost monthly knee

drains,to tell you the truth I don't recall what I was

taking other wise but it was allot..mainly was to be

able to wean off the prednisone..so after a couple

years the enbrel started to loose its effectiveness so

I upped the injections to more than 2x a week.I also

had fallen back to my old ways of eating so I decided

to get back on track..the need for more enbrel

decreased with the dietary changes.Today I have

refined my diet to the point that I only take a

injection every 10-12 days.Cut out all the bad

fats..they are murder on your condition..get a guided

imagery tape on self healing I have one on arthritis

its great ,stay away from wheat,don't eat nuts except

walnuts,drink green tea 20 oz a day or more..I get

mine decaffinated with mint and its great..take

Zyflamend,subscribe to DR Weils news letter and change

your eating Im not saying eating is the problem but

there are things that can help or hurt learn what they

are...use modern sciences discovery and knowledge to

work for you..sorry if I sound like Im preaching but I

heard this for years and it took along time to sink

into my thick skull so maybe it will be of some

benefit to others..peace jon

[Guest guest]

Jon,

I hope you don't mind my asking, but I'd like to know what disease you

have been diagnosed with? Yours, Harv 47 yr

old/ Reiter's 23 years

[Guest guest]

I don't believe that enbrel is for me either, I've kept a sinus infection since

I started on this 7 weeks ago - the injection sites are sore and stay warm for

several days.

instead of feeling better I'm going the other way - I'm taking 2-3 pain pills

aday just to be able to walk. I hope to be talking with my rheumy tomorrow - is

anyone having any luck with humira? or is remicade a better option?

Thanks

Jan

[Guest guest]

Hello,

My mother has severe PA and her doctor has recommended

Enbrel. Her insurance company will not pay for it and

it is about 1300 a month otherwise. Does your

insurance company pay for it?

Thanks,

Cheri

[Guest guest]

My name is Wilma and i live in Scotland, i was reading about the

enbrel that you had started and was wondering if you could tell me

more about it. I asked my rheumy over here about it and he said it

is not legal over here yet. I was diagnosed 4 years ago and have

been on 7 medications and the latest was Methotrexate but

unfortunately i have been allergic to all of them.

I'm fed up of the swelling and if i could get enough info on this

Enbrel then i could approach them again and see what happens. Thanx

Wilma