Enbrel

[Guest guest]

Hi, Illena

If the May-June copy of Arthritis Today is to be believed, they also have a

long waiting list for their assistance program, but it doesn't hurt to try.

Phone # 1-800-282-7704. Just adding your name to the list of those who are

awaiting a relief from the unconsciounable cost of Enbrel might make someone

raise their eyebrows. Clinical trials and the high cost of some medications

was the subject of a one-hour Talk of the Nation on National Public Radio

last week. We just have to keep up the pressure in whatever way we can to

get relief.

There is pressure also being applied from insurance companies. My insurer

(the University is a self-insurer which means they don't have to follow all

the rules that the insurance companies do) just sent me a one-page alert to

say that beginning in mid-April, if you were not on some medications

(including Celebrex and Enbrel) you could not get the insurance to pay for

getting on unless your doctor could document that you had tried all other

options with no success. It would seem they also are responding to the high

cost of these seemingly very effective drugs. We just have to keep

pressuring and not allow anyone to rollerskate over us.

Maggie

[ ] Enbrel

>

> Ilena

>

> P.S. Immunex does have a reimbursement program but as I understand

> it, they also require that you have RA, and no insurance coverage.

>

>

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> We are currently discussing new chat times. moderates a

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>

[Guest guest]

Hello Maggie. Yes, Enbrel does do amazing things. To deal with the 3 day/4

day lag, I have found that a Sunday morning / Wednesday evening schedule cuts

the week right in half (more or less).

As I understand it, Enbrel blocks the TNF and actually stops the

inflammation. I don't believe it is masking the symptoms o merely treating

the pain, but actually stopping the process. I have other

auto-immune/inflammatory disorders and the Enbrel seems to be helping all.

Good luck.

Ilena

[Guest guest]

Maggie,

Glad to hear that the Enbrel is helping you. If you

seen some of my postings, you know that I have been on

Enbrel for a while and its really improved how I feel.

Keep up the good work and feel good.

-Jay

[Guest guest]

Hi Gloria:

I took Enbrel for a few months , so I can fill you in on it. It is a new

drug taken via injections - 2 per week - in the fatty tissues like a

diabetic takes. It works by supressing the immune system - specifically, the

tumor necrosis factor (tnf). This is the part of your immune system which

searches for tumors and when it finds them, it destroys them. It is also

very active in the inflamation that occurs in the joints. Thus, when it is

supressed, the body cannot produce much inflamation. It works extremely well

for some. The downside is obviously there is not enough years of actual use

to know what the long term dangers are, if any. For example, it may allow

cancerous tumers to grow where they would'nt have if the tnf was working

properly. Also, a small number of people who participated in the double

blind studies actually died from complications resulting from the drug. They

were people who had bad infections and brittle diabetics mostly. It should

never be taken if you have infection problems. The total number who died was

small statistically - something like 12 out of 20,000 subjects. But if you

were one of the 12, the statistics don't mean much I suppose. Anyhow, it

could probably be taken with AP, but I don't think anyone in the group is

doing so. I quit before I started the AP........Hope this helps,

regards........Dean.

rheumatic enbrel

> Hi,

> What exactly is enbrel? Is it, like methotrexate, a dmard? does it

> have the things we are trying to get away from on the AP? What are the

> potential side effects?

> Thank you,

> Gloria

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[Guest guest]

Dear JB,

thanks for the info on Enbrel. I could sure use the energy, etc. that

comes from taking it, but my health is so fragile, I am afraid that I

would get a fatal infection. I am depending as much as is humanly

possible on the AP alone to help me. It seems to me that you are having

the same trouble with doxy that I had for 2 1/2 years...it didn't work

well at all. Maybe you should change antibiotics and you could get off

the enbrel. Did you try minocycline. It worked great for me and I am

hoping biaxin will also.

love,

Gloria

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

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[Guest guest]

LaRita -

In answer to your question...I have been on Enbrel since March 2000...It is

working great (thank g-d) . I am not on MTX with the Enbrel but then again,

I never took MTX alone either.

I do know that there are other members on this list that do take MTX along

with the Enbrel and they have also gotten good results.

My suggestion would be to discuss it with your Rheumy and try to get him to

agree to let you try the Enbrel alone first and then add the MTX only if

necessary.

Good Luck and I hope it works for you too!

Rivky

[Guest guest]

Hi Anton and Helge,

It's been such a long time. Glad to hear from you, both Anton, I was

browsing through the newsgroup the other day and found a message asking

a question similar to yours. I'm sure there have been quite a few more

reponses there, so it may be something you'd like to check via the

alt.support.arthritis newsgroup itself, or through the deja archives. I

will paste in the response below. I, too, share Helge's hope ~ that this

is a successful treatment for Vivien. Wishing him the best!

Helge, it's wonderful to hear that has made some progress and

is staying stable with help from Enbrel. I had hoped, by now, that she

had been able to drop even lower on the steroids but I guess after this

amount of time it is an extremely gradual process. Especially for these

children, like your daughter and my son, whose arthritis seems to

respond well only to the steroids. 40% decrease in about 6 months seems

successful. What amount of daily steroid was she taking in December? And

how much is she on now?

I ask because I was surprised to hear that still has some

Cushingoid symptoms. Josh is currently on 15mgs a day. Soon to be

lowered to 12.5mgs. Normally, in the past, when he reaches around 10

-12mgs per day the Cushingoid symptoms have disappeared or decreased a

lot. I wonder if it may be harder now, and this not the case, because of

the extension of his using he drug? It's been a very long time since

Josh was taking a lower dose. Over a year. Thank you, both, for sending

in the brief updates. Please say hello to both children for me and

.

Aloha,

Georgina

Helge Heitmann wrote:

> Anton wrote:

> > Hello all,

> > Viven (11) has been for 1.5 years now under MTX, cyclosporin and aspirin

> > and 10 mg cortison.

> > He has helped him a lot after some bad months.

> > Doctors think to put him on EMBREL now.

> >

> > In your experience, when you use EMBREL is it possible to discontinue all

> > other drugs ??

> > Anton GRUSS

> Hello Anton,

>

> We started Enbrel injections in December last year. At that stage she only

> used steroids (that is the only drug which works for her, even mtx gives

> zero effect). Just 2-3 days after starting Enbrel she was markedly better!

> All inflammation sites improved. Hence, we could start lowering the pred

> doses immediately. We followed a gradual tapering down scheme forward in

> time and continued until the inflammation returened somewhat after a couple

> of months. Then, we waited for a couple of months and tried further

> reduction.

>

> Prior December, she was in a steady state for a couple of years on a

> constant high dose of pred, due to Enbrel she is now 40% lower in pred

> consumption, and that is really a significant reduction and we are very

> happy aboat that. However, her cushing syndrome has not reduced much, it

> seems that there is a very long time delay (lag) of that process, some kind

> of hysteresis.

>

> Good luck, hope that Enbrel also works for Vivien, he and you really

> deserves that.

>

> Best regards

> Helge

> PS In March I think about climbing the Mount Blach mountain north of you in

> Grenoble. You are lucky to have so many high points near you!

--------------------------------------------------------------------------------\

-------

Newsgroups: alt.support.arthritis

References: <8iefd6$h9b$1@...>

Hi, Its really good to read that you are excited about your new

medicine and are expecting good things to come of it. Any RD will tell

you that a persons state of mind about the steps they are taking to

help themselves needs to be positive. So let me add to your positive.

I have stopped all other medicine because of Enbrel and I have had

RA for over 20 years. I look forward to you posting the same thing and

it IS going to happen.

somebody else had written:

>

> Greetings everyone,

>

> Had my very 1st Enbrel injection about 4 hours ago (in my thigh). I

> have Ankylosing Spondylitis (AS) and my meds were not working (meth,

> sulfa,pyrox). Lots of pain in my spine. I'm hoping (praying) that the

> Enbrel works.

>

> My insurance covered it without a problem. Just sent off the Enbrel

> prescription in the mail ($12 co-pay), like I've done for my current

> meds. One week later it came by UPS. Didn't have to write any special

> medical necessity letters or anything. I hope it continues like this.

> I bet the 'bean counters' at the insurance company will hate me.

>

> Anyway, I've been very excited about this and I hope to have the same

> reaction as the other 'miracle' stories I have read about. Maybe I can

> even get off may other meds, or at least cut down on them.

>

> Has anyone else on Enbrel been able to cut down on their other meds?

[Guest guest]

Hello Melodi,

Thanks for sharing your story with us. And for offering to answer some

of our questions, too. I think it's great that you've had a good

response to Enbrel. Though it may not be the 'miracle drug' for everyone

who tries it, it has helped quite a few people in their battle with

arthritis. Have you experienced some remissions of your JRA in the 17

years since you were diagnosed? Times when you did not need to take any

medications? Have you had any joint surgeries as a result of the

arthritis? Do you have a favorite and least favorite med, out of all

that you've tried? If so, what are they and why?

Thanks, and welcome to the group

Aloha,

Georgina

sidolem@... wrote:

>

> Hello, my name is Melodi and I am 23 years old. I was diagnosed with JRA at 6

> years old and have been on quite a bit of drugs like your sons and daughters.

> My drug history includes prendisione, tolectin, plaquenol,naprosyn,

> methotrexate, gold injections and more recently Embrel injections. I am

> incredibly pleased with Embrel. After about a 1 1/2 weeks I started seeing

> tremendous results. My joint pain, swelling and morning stiffness decreased.

> I am going on a year on this drug. I am still taking anti-inflammatory for

> those wet days that really cause my joints to ache. I have been reading all

> of the recent postings and would be happy to answer any questions that you or

> your children may have. I am currently an elementary school teacher and have

> come such a long way. I hope everyone is having a good summer!

> Take care,

> Melodi

[Guest guest]

Pat - I am starting enbrel as soon as my ins. co. approves it - I've been on

MTX and prednisone without a whole lot of success so I'm really excited to

hear that enbrel has done so well for your hubby.

I'm keeping my fingers crossed (no wait, that hurts too much! so I'll just

pretend!) that it will do the same for me.

Best of luck to him for continued improvement,

[Guest guest]

, I am also on pred. and mtx., and also waiting for ins. approv. We

will no doubt be starting the same time. I am in good shape on my

combination of drugs, but want to shed the pred and down on mtx. Good luck

Betty

[Guest guest]

Thanks Betty -

Good luck to you too - I can't wait to get off the " wicked witch " medicine as

well. I love that pred. let's me live my life, but I sure hate the mood

swings!

I'm hoping Enbrel does the trick for you and me both!!

[Guest guest]

I too am waiting for insurance approval to start Enbrel.... I'm hoping for

the best but not too much cause the Meth, Arava, Gold, Sulfasalazine,

plaquenil, etc, etc that I've tried in the past have ALL done absolutely

NOTHING for me. No bad side effects, but nothing good either. I'm

encouraged by the promising reports Ive heard, and my Rd particularly

thinks Enbrel is MORE effective for PA patients than for RA!

So in the next week or so I'll be learning how to inject myself (another

reason I've been putting this off). I'm still uneasy about the unknown

long term effects of being on Enbrel for years, but I figure I should at

least try it and see if it helps. I look forward to seeing more reports of

it here.

[Guest guest]

hi everyone,

a short update on my health. i have been on AP for 2 yrs with great progress made. i have rotated between minocin, doxy, zithromax and clindy IV' s. dropped metho, plaquenil, sulfasalazine, and dropped my pred from 15mg to 3mg. i am still on 1200mg of daypro per day. then in the beginning of june i decided to take a few weeks off to settle my system before starting up again. june 20th, i ended up in the emergency room and almost died. i had pericarditis (spelling?) it hit fast and squeezed my heart down and made it stop 3 times before they figured it out. they split my chest open and cut the a hole in the sack around my heart and drained the fluid out. then about 10 days later the lining around my lungs begin filling with fluid. they put me on indocin to get the inflammation down and now 45 days later i am feeling better. although my joints are hurting some because i have been off the daypro. today i started enbrel. the cost is only $15 per month with my insurance so its not a big deal. i am interested in any feedback others have had on enbrel. also, is it possible to take doxy/ zithromax with the enbrel? thanks in advance for any info.

dave

[Guest guest]

Hi! I haven't posted in a long time, but wanted to share me experience w

Enbrel.

I startwed it in March ~ it worked amazingly well. I remained on zithro &

200 minocin m,w,f. However, after about 2 mos, I started getting sick

frequently ~ 2 bad stomach viruses & colds. In the meantime I found an MD who

is big on alternative treatments & he put me on Transfer Factor & several

Metagenics supplements to boost my immune system. I decided to cut back on

Enbrel to one shot a wk. That & the supplements have helped me tremendously ~

the inflammation is down, & I haven'y been sick.

However, while I dropped the zithro, I remain, & intend to remain on

minocin.

Blessings to all,

RA 25 yrs; Ap 4 yrs, innumerable supplements

[Guest guest]

I have also cut down my Enbrel injections to once a week with no ill effects.

I did this about 3 months ago when I started on the Minocin. I was on the

Enbrel for one and a half years and now I wonder if I Needed the Enbrel

twice a week . I hope to get off the Enbrel at some time in the future but

for now I will stay on it. I am currently cutting down my Prednisone from 7

mgs to 6 mgs and thats enough of a challenge for now. Patti

[Guest guest]

A forward from Dlillysr@... --

Remember, the address for the list is:

psoriatic arthritisegroups

--- Dlillysr@... wrote:

From: Dlillysr@...

Date: Tue, 22 Aug 2000 21:53:30 EDT

Subject: Enbrel

Would someone please give me some information about

" Enbrel " ? I have seen Enbrel mentioned in many of

the messages on this site, but I have no idea of

what it is or how it works. Is it another

hydrocortizone treatment or is it an

anti-inflammaory drug? How is it applied? What are the

side effects?

Thanks

__________________________________________________

[Guest guest]

Gail

Thanks for the information on Enbrel. I guess it doesn't sound to good to

use with the immune disorders and some of the sides are like those he already

has on the Combo now. I keep trying to find something that might help him

through that awful part of the combo sides joint pains and since he has had

rheumatoid arthritis since he was about 14 years of age anyway that is one of

the worst sides he has from the combo. Thanks again. Hope this finds you

well!!

Winne

[Guest guest]

Many questions about Enbrel lately, I'll bring what little I know to the table.

I have been using Enbrel for several months now.

Prior to starting Enbrel: I was taking Methotrexate (12.5 mg/wk), folic acid

(daily), naproxen sodium (daily), and Cyclospirin (2x daily) prior to the

Enbrel. I also exercise daily (walk 1/2 hour)and feel this to be an important

part of the treatment. I watch my diet, try to sleep enough as well. I have been

able to maintain my weight, blood pressure, pulse rate and general health pretty

well. I work 40 hours a week at a job that is at times stressful, but not

physically demanding.

When I started the Enbrel I stopped the Cyclosporin. After starting the Enbrel I

was immediately able to cease taking the Naproxen Sodium (NSAID). I was pain

free before, with the NSAID, and am now pain free without it. My ears rang for

years, they have mostly quit that now. For those who need to know why, NSAIDs

are blood thinners. The thinner fluid working in your ears resonates at a

different frequency, causing them to ring. That's my story and I'm sticking to

it ;-)

My rheumatologist is considering reduction of the MTX dosage, but we are moving

slowly. So far, so good.

It was somewhat intimidating to inject the medication the first few times, but

that has gotten easier mentally. Physically, I have found that I can only inject

into my belly around the navel, and my skin is getting tougher so it's a little

harder to stick myself. I tried the inner thigh as suggested by the instructions

but I don't carry enough fat there, resulting in bruising. My belly is the only

spot where I can " pinch an inch " , so that's where the Enbrel goes.

As far as the insurance paying, so far so good. My rheumy " handled " getting Blue

Cross approval, and I use their mail order prescription program. Works well,

costs me $20/month/prescription filled. I can go to the website to order refills

and UPS delivers to my home.

It's working for me, the other day I even found myself running a couple hundred

yards to the truck to beat the rain! Your mileage may vary.

happy trails - Rob Glover

[Guest guest]

It is so nice to hear your positive reports that you all send in about

enbrel. Miracle drugs do happen and I'm not giving up easily. Betty in VA

[Guest guest]

Kathy,

My 13 year old son takes both Methotrexate and Enbrel. The

Methotrexate alone did not work, but both together are working.

The down side is that because Enbrel is so new, not all the

side effects may be known. Also, there is an issue with infection.

We don't ever inject if my son has any type of infection, cold etc.

Jana

[Guest guest]

My 7 year old daughter has taken Enbrel since the beginning, just as a study

drug and now FDA approved for about 3 years now and there has never been any

question as to it's positive effects on her quite severe case of systemic

JRA. No side effects have been noted at all aside from site injection

bruising and/or slight lumping of the skin at the injection site. As with

many treatments for JRA, some of these medications do cause immune

suppression and colds/infections can be easier to get and harder to ward

off. This hasn't been an issue for my daughter as of yet. Also, as per her

Rheumy, Enbrel is to be given twice a week at the same times at all times.

With Enbrel, she is also taking Oral Cytoxan daily, which is chemotherapy,

that again greatly suppresses her immunity to illness/infections. I

wouldn't suggest stopping her Enbrel infections without thoroughly

discussing it with her Rheumy. I personally haven't been informed of any

issues with infections and Enbrel so if you know of this info, please let me

know where I can research this.

----Original Message Follows----

From: JANABECKER@...

Reply- egroups

egroups

Subject: Re: Enbrel

Date: Fri, 6 Oct 2000 13:02:38 EDT

Kathy,

My 13 year old son takes both Methotrexate and Enbrel. The

Methotrexate alone did not work, but both together are working.

The down side is that because Enbrel is so new, not all the

side effects may be known. Also, there is an issue with infection.

We don't ever inject if my son has any type of infection, cold etc.

Jana

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[Guest guest]

Kathy,

my daughter, age 14, has been on the Embrel and we are tapering off the

methotrexate. I've seen it work miracles. 6 months ago, she was sooo sick

she could barely move, now no one knows she's sick. It's a tough disease

though. The only downside I see with the injections is that now that Alana

can physically do most activites in gym they've been doing a lot of

sprinting and the area where she has the injection (her thigh, since she

finally started injecting herself.... yeah) bothers her when she runs. Oh

well.......... I guess we can live with this.

Bonnie

Regional Director, PHD Products

http://phdproducts.com mailto:bonnie@...

800-863-3403

Enbrel

>Hello,

>My name is Kathy. I have a 9 year old son who has scleroderma. He

>was diagnosed at the age of 5, but before that at the age of 4 he was

>misdiagnosed with JRA for about 8 months. He too takes probably the

>about the same medications as your children do. He's on .8

>methotrexate by injection.

>

>I'm looking for information on Enbrel. Can anyone tell me anything

>about this drug for JRA? I have another parent whose child has

>scleroderma and JRA. Their ped. rheum. has wrote out a prescription

>for Enbrel. Before they give their child Enbrel they wanted to know

>more about this drug.

>

>We have 2 groups under egroups too.

>

>Thanks

>

>Hugs & Support <3

>Kathy

>Juvenile Scleroderma Network

>http://www/sclero.org/support/groups/juvenile/a-to-z.html

>Kids Get Scleroderma Too - Message Board & Chat

>www./group/kidsgetsclerodermatoo

>JSD Youth Group - Message Board & Chat

>www./group/JSDyouthgroup

>

>

>

>For links to websites with JRA info visit:

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

>

>

[Guest guest]

Hi Bonnie,

So happy to hear that Alana continues to do well. I'm so glad. Maybe as

she gets more comfortable with giving herself the injections she'll

consider doing them into other areas? I've heard they can be done in the

stomache as well as thighs. What about upper arm? On second thought, I

guess that would be too hard if you're doing it yourself. She must be so

excited that she's able to be so physically active again

Aloha,

Georgina

Bonnie wrote:

>

> Kathy,

> my daughter, age 14, has been on the Embrel and we are tapering off the

> methotrexate. I've seen it work miracles. 6 months ago, she was sooo sick

> she could barely move, now no one knows she's sick. It's a tough disease

> though. The only downside I see with the injections is that now that Alana

> can physically do most activites in gym they've been doing a lot of

> sprinting and the area where she has the injection (her thigh, since she

> finally started injecting herself.... yeah) bothers her when she runs. Oh

> well.......... I guess we can live with this.

>

> Bonnie

> >Hello,

> >My name is Kathy. I have a 9 year old son who has scleroderma. He

> >was diagnosed at the age of 5, but before that at the age of 4 he was

> >misdiagnosed with JRA for about 8 months. He too takes probably the

> >about the same medications as your children do. He's on .8

> >methotrexate by injection.

> >

> >I'm looking for information on Enbrel. Can anyone tell me anything

> >about this drug for JRA? I have another parent whose child has

> >scleroderma and JRA. Their ped. rheum. has wrote out a prescription

> >for Enbrel. Before they give their child Enbrel they wanted to know

> >more about this drug.

> >

> >We have 2 groups under egroups too.

> >

> >Thanks

> >

> >Hugs & Support <3

> >Kathy

> >Juvenile Scleroderma Network

> >http://www/sclero.org/support/groups/juvenile/a-to-z.html

> >Kids Get Scleroderma Too - Message Board & Chat

> >www./group/kidsgetsclerodermatoo

> >JSD Youth Group - Message Board & Chat

> >www./group/JSDyouthgroup

[Guest guest]

Has anyone had any luck with enbrel? I am scheduled to start this in January

with a new rheumy. Any comments?

Diane

[Guest guest]

I've had good results with Enbrel, I still use MTX as well. They seem to be

synergistic in my case. As far as working with " soft " tissues, there has been

documentation of Enbrels' efficacy in dealing with certain heart conditions

(congestive heart failure, where the heart muscle becomes inflamed, as my

feeble memory serves). There was a story concerning this at the following

link.

http://www.cnn.com/2000/HEALTH/11/13/arthritis.heart/index.html

This would, to me, seem to say that maybe it does have some effect on

muscles, tendons, and the like.

happy trails, Rob Glover

<SNIPPED and consolidated> (for Conradical ;-))

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

stay on the MTX? Any thoughts?

Thanks, Becky>

<Has anyone had any luck with enbrel? Diane>

<Has anyone out there gotten relief for soft

tissue pain from Enbrel? >