Enbrel

[Guest guest]

Well I guess I'm fortunate in the sense that I only have to pay 20.00 per month

for my Enbrel through UHC. I pick up my first dose on tues, and get my

training/first inject. on wed.

-- [ ] Enbrel

>

> Hi all,

I am new to this list and have had PA for about 5 years. When I

was first diagnosed I joined a group but I am not sure if

this is the same one. Anyway, I am now on my 3rd Rheumy and

when I went into to see her last Thurs. she took one look at my

hand and decided that I should go back on Methotrexate or in her

words, perhaps Enbrel would be a better choice for you. She

also indicated that it would most likely allow me to go off all of my

other meds. Azulfadine and Placquinil and I would only need the

Voltaren on an " as needed " basis. I was estatic to say the least.

That's 10 less pills a day. Whoo whee!

Then came the bad news. First it took a week to get approved

from my Blue Shield PPO, then after all that, I was told that my

cost would be $405 per month. Hello, car payment. Who can

afford that? I did a bit of checking and found out that Canada

cannot export the drug and the cheapest I could find was Costco

on line at $360 with my prescription coverage.

Is this what you are all paying? How do you do it? Is there some

special prescription coverage that I can get to assist me.

I am currently also on Zoloft for the depression and stress I go

through from this as well as family challenges. All of my extra

monies is currently going to help out my parents with their

finances.

Any suggestions would be greatly appreciated. Sorry to dump on

my first post but I am somewhat desparate. I have even

contacted, my insurance broker (no help there), my doctor (again

the Costco suggestion was all she could suggest), and the

Enbrel support line, (they are checking into possibilities for me).

Again, thanks so much for your comments and suggestions.

Best wishes to one and all,

Dez

Please visit our Psoriatic Arthritis Group's informational web page at:

http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

Also,in August 2001,list member Jack aka Cornishpro@... began

to conduct extensive research which he publishes as the " Psoriatic

Arthritis Research Newsletter " , monthly in our email and digest format. Many

thanks to Jack. Back issues of the newsletter are stored on our PA webpage as

well as the archives of the list.

Don't forget that the list archives comprise a tremendous amount of

information (Over three years of messages and answers).Feel free to browse them

at your convenience.

LET'S HEAR FROM SOME OF YOU LURKERS out there! If you have a comment or

question, chances are there is a person who has been around a while who can

help you out with AT LEAST an educated guess for an answer! If not,we can

steer you in the right direction with a good website to go to,

Blessings and Peace,

Atwood-Stack, Founder

Alan , Web & List Editor

Jack , Newsletter Editor

Pat Bias, List Editor

Ron Dotson, List Editor

Orin, List Editor

, List Editor

and any others who help in any way (thank you!)

[Guest guest]

-Hi Dez,

Welcome or welcome back You might check to see if your insurance

coverage is different for remicade which is similar to Enbrel but

given by an iv in the Doc's office or a hospital. My primary

coverage is medicare and it doesn't cover Enbrel at all because it is

an outpatient med but covers remicade at 100% because it is

considered an inpatient med.

Good Luck,

Marti

[Guest guest]

Sorry for the VERY late reply -- I have a had a few bruises with the new needles, but not as many as with the old needles... Maybe it is time to review the injection procedure again? Are you making sure to enter at 45 degrees? Do you stab or press the needle in? I am just throwing things out here... Of course, we have always known you to be a sensitive soul!

Hope something here helps!

Kate

Largo, FL

[Guest guest]

Hi Kate,

Thanks for the reply.........I forgot to mention my bruising to my Rheumatologist last week and now I'm in California so...........I shall try being a little less assertive while "jabbing" the needle in my tummy. When I was having a pelvic ultrasound a couple of weeks ago, the tech noticed all the black and blue marks and told me I should speak to my doctor about them as they might be a "tell tale" of Diabetes. There's none in my family so I didn't give it much concern but I wish I would have mentioned them to him. I've not taken Enbrel for the last three "poke" times as I have a dilly of a cold and it says all over not to use it if you have an infection. I don't know if having a cold equals an infection but I thought I'd better not take a chance. I shall resume tomorrow.

You know, I heard or read something about Humira last week or a few days ago...(I'm old).... and it was not positive at all. I thought that ...Oh, I shall have to tell the group about that.. and I've forgotten what it was. All I remember that it wasn't favorable. I'll bet Caroline knows of what I'm speaking???? Our little Encyclopedia of medical knowledge person.... )

Since I seem to faring well on Enbrel I think I'll stick with it.

Hope you are faring okie dokie...... )

Ca. Carmen

[Guest guest]

Have you tried going to www.psoriasis.org they may be able to help with the

cost.

Thanks,

[Guest guest]

And I am still waiting on medicare and medicaid to approve my Enbrel injections.

Please people.... we need help here advocating for more of this. SIGH.....

<sitting here in pain--mild flare>

LeAnn Cayer & Furbrats Blossom & Meriko

Heart Bandits American Eskimo Dog Rescue

Railroad Coordinator www.heartbandits.com

[Guest guest]

.. He's bamboosled the ins company before since

> it's not approved for PA, just RA. According to him it's the same

> desease. He's the one in our area that does the clinical trials so

I

> do trust what he says.

> I'll be looking foward to your comments.

Hi,

Yes, here we have these wonderful new medications for some-but how to

pay for them? Definitiely a problem-an article I read said not only

do we americans pay more for our medications than any other nation in

the world(Switzerland is second and 47% behind us) but that the drug

costs are rising 15% a year.

Remicade is approved for PA now-I get it covered by medicare under

code 69.0-psoriatic arthritis. That is why I take remicade over

Enbrel and Humira and it has worked for me. Good Luck-hope the same

strategy will work for you-and Kudos to your doc for helping you

fiqure it out!! I had to do the research myself.

also-the NPF (psoriasis.org) has an advocacy team that helps people

get needed medicine.

Best to you,

Marti

[Guest guest]

Well folks,

Today I got my SUPRISE. A pharmacy (specialist one) in texas faxed

me...........

OKLAHOMA MEDICAID APPROVED THE ENBREL!

SO.... for those of you on Medicaid--DO NOT overlook that option. Get your

doctor's office to fight Medicaid to cover it. It is worth the fight--and I

think we all need to join in with the others in fighting to get Medicare to

cover as well. My copay? Only $2 a month!

NOW the next hurdle is to get the clinic & Medicaid to approve a home health

care nurse to come give me the injections because I cannot do it myself (I am

legally blind as well as being deaf), and I have no one living with me who could

assist. My fiance' is in Denver and is not moving here until December or Jan.

Gosh............

LeAnn Cayer & Furbrats Blossom & Meriko

Heart Bandits American Eskimo Dog Rescue

Railroad Coordinator www.heartbandits.com

[Guest guest]

Good Luck, LeAnn! (Va.)

[Guest guest]

Thanks !

To be honest I am scared to death. I have a big, and I mean BIG thing about

needles. I tend to pass out when shots or blood work.....passed out cold when I

had my ears pierced at 16. LOL.

My fiance' wants to learn how to give me the shots. To be honest I cant trust

that. I feel more secure if I had a home health nurse (provided by medicaid or

medicare) do it. I guess I am just toooo paranoid--and what if I pass out? A

nurse would be right there with her knowledge of how to take vitals....

Add to that I have BPD. Borderline Personality Disorder--and when I have come to

from passing out or almost passed out from a needle, the whacked blood pressure

sets off one of my rages. I sure would not want to hit him and not mean to!

So, I am pretty scared here......but at the same time, this chronic pain in my

muscles with Lortabs & Naproxen doing NOTHING is getting old.........only

Flexeril helps some....<SIGH> Since I am on medicare and medicaid it is not

always easy to see a Rheumy. I have not been to a Rheumy in 4 years. I am glad

that my Dermo is so willing to treat the PA.

I have one question. Does constant pain mean my PA is worsening? Or am I in a

flare AGAIN? Even the " tingling " in the shoulders is back.

On a positive note.... I found something that really helps my poor hands. It is

called Country Bunny Shea Body Butter. It really HELPS calm the redness and make

my skin feel softer. Feel free to email me or ask on list for the website url.

<SIGH> I need a life in a small town that is stress free and quiet where I can

continue to work part time with my business and Eskie Rescue work. My fiance'

will not be moving here til Dec or Jan. He is of the type that is very

helpful and always there for me.

LeAnn Cayer & Furbrats Blossom & Meriko

Heart Bandits American Eskimo Dog Rescue

Railroad Coordinator www.heartbandits.com

[Guest guest]

hi,

i have been on enbrel about a month now, i was prescribed for

psoriasis. my arthritis has been moderate to getting bad again

since oct. a lot of inflammation and pain getting bad again.

i could feel a difference the first night. i lost 5 pds the

first week from the inflammation going down, mostly in knees.

the pso. is starting to get better. this has been the most

effective med. i have ever taken. for example, it is 7:00 a.m.

i have been up for half hour, got kids up and their breakfast.

no pain this morning, didn't have to struggle just to get off

toilet. able to type this, not happening a month ago.

that has been best part for me, being able to get up in morning

and feel normal, and not want to go back to bed after they all

leave. no side effects yet.

good luck

susan in ohio

[Guest guest]

Thanks for your comments craig....called my Rheum Doc and was told they should

manage the treatment of the Psoriac Arth rather than a Dermatologist...gonna go

see the Rheumie and see what she recommends.....have had these rashes popping up

for a few years now....been putting cortisone on them but it just hasn't done

the job....it's time to get it taken care of.

rheumatic ENBREL

I WAS ON ENBREL FOR THREE MONTHS, I WAS ADMINISTERING SHOTS IN MY STOMACH. THE

NEEDLE WAS THICKER THEN OTHER TYPES OF NEEDLES.

IT WAS HARD AT TIMES TO DO THE SHOT. THE RESON THE NEEDLE IS

THICKER IS BECAUSE YOU HAVE TO MIX THE POWDER MEDICINE WITH THE LICQUID.

I DID THE SHOTS TWICE A WEEK. I BROKE OUT INTO A RASH WHERE I GAVE

THE SHOTS. WHICH HAPPENS TO SOME PEOPLE.

IF YOU HAVE ANYTYPE OF INFECTION TEETH, COLD, OR WHATEVER IT SAYS

TO DISCONTIUE IMMIEADATLY.

I PAID THOUSAND FOUR HUNDRED DOLLARS A MONTH FOR THE MEDICINE.I

ALSO HAD TO TAKE FOLIC ACID AND METHETEXATE WITH THIS.

I DIDN'T FEEL RIGHT TAKING THESE MEDS.I'VE HAD R.A. FOR THREE

YEARS ALREADY. AND STILL SEARCHING FOR SOMETHING.

[Guest guest]

hell yeah dude, i just got the script today and the doctor is going

to guide me through my first injection this friday, so hopefully it

will work and ill still be able to go to the fireacademy when i get

out of highschool int he coming months

> hi,

> i have been on enbrel about a month now, i was prescribed for

> psoriasis. my arthritis has been moderate to getting bad again

> since oct. a lot of inflammation and pain getting bad again.

> i could feel a difference the first night. i lost 5 pds the

> first week from the inflammation going down, mostly in knees.

> the pso. is starting to get better. this has been the most

> effective med. i have ever taken. for example, it is 7:00 a.m.

> i have been up for half hour, got kids up and their breakfast.

> no pain this morning, didn't have to struggle just to get off

> toilet. able to type this, not happening a month ago.

> that has been best part for me, being able to get up in morning

> and feel normal, and not want to go back to bed after they all

> leave. no side effects yet.

> good luck

> susan in ohio

[Guest guest]

well, all good things must come to an end. the first month of enbrel

that anthem sr advantage paid for was a mistake. they will not pay for

name brand drugs. i have spent since last friday trying to get them to

understand that there is no generic,etc. my dr. called and they told

him i was approved for a year, but then when i got to cvs, i still had

to pay full price. one rep said, medicare b would cover it, but it

still came back uncovered, then the next rep said no, it no longer is

a med.b drug. today i am going to start over with anthem and demand to

speak to a higher up. enliven won't help because we are middle class,

we made too much money last year to qualify for assistance.

i wrote my congressman even, more to vent really.

my dr. is going to continue to try, but i am so upset because i am

one of the ones that enbrel works for. I feel so good now, especially

in the morning.

the arthritis foundation is checking into it also, but i haven't heard

back yet.

if anyone has any other suggestions, please email me.

my husband starts a new job in a couple of weeks, but there is a 90

day waiting period. we had to do own insurance for his last job, which

i couldn't get on.

sorry this is long, just needed to vent to people who can understand.

(actually, hubby suggested i ask you guys)

susan in ohio

[Guest guest]

jca@... writes:

<<sorry this is long, just needed to vent to people who can understand.

(actually, hubby suggested i ask you guys) susan in ohio>>

,

Don't give up fighting because I dealt with many insurances companies

working in the doctor's office and many companies deny claims and try to get

away

with it. I always had to appeal to companies and many times won. Have your

doctor write a letter to your insurance company stating that this is a medical

necessity that you take this drug. Good luck.

JANET

[Guest guest]

Hi ,

I have medicare and it covers remicade. They even use the code for

PA. I know it is not Enbrel but maybe it would also help you. I have

had good results.

I contacted the local office of my congressman when I ran into

trouble getting it and they helped me to get back on it. Turned out

it was some kind of office error. they have a staff member whose

main job is to help with medicare problems.

good Luck,

Marti

[Guest guest]

" snowbound22003 " <mlw402@a...> wrote:

> I have medicare and it covers remicade. They even use the code for

> PA. I know it is not Enbrel but maybe it would also help you.

.. . .

> I contacted the local office of my congressman when I ran into

> trouble getting it and they helped me to get back on it. Turned

>out it was some kind of office error. Marti

Thanks for answering, does it help with psoriasis, and do you take

methotrexate, too? i can't take mtx anymore. i would willing to try

it if it works for psor. and i didn't have to take mtx. this has been

a nightmare, medicare used to cover enbrel, not anymore. i would been

better off if anthem had denied it in the beginning and i didn't know

what i was missing.

thanks again

susan

[Guest guest]

<<ks for psor. and i didn't have to take mtx. this has been

a nightmare, medicare used to cover enbrel, not anymore. i would

been better off if anthem had denied it in the beginning and i didn't

know what i was missing. thanks againsusan>>>

Hi ,

I might sound a little like a Remicade ad but I am not

kidding....after struggling for 35 years with severe,recalcitrant

psoriasis remicade completely cleared my skin after 2 treatments. It

remained completely clear at the lowest dose,every 8 weeks for 1

year. Now I have a few patches back...nothing like the 80% coverage

I did have. We are moving my treatments to every 6 weeks and if

neccesary can increase the dose.

I take it without MTX. Many docs recommend the MTX with it to,

hopefully, keep your body from building antibodies . This could make

the remicade ineffective. Since MTX makes me sick one rheum said go

ahead and stop it and just take Remicade alone.

Hope it will work for you....it sounds like we are similar in nature.

Good Luck,

Marti

[Guest guest]

Hi Tony,

Yes your doc is absolutely correct! It does suppress the part that

looks for tumors(TNF) and the mtx which a lot of times also needs to

be taken with Enbrel,suppresses another part of the immune cascade

So you're, in fact, disabling your immune system! The risk for

infection is huge. If you are prone to infections like Sinus or

bladder etc, this is not a great move because you need to discontinue

the enbrel if an infection arises. The problem is hidden infections

and I did have a friend die from just that, a hidden infection that

she did not realize and never discontinued the Enbrel.

If you have the psoriatic, can you try Ivs of Clindamycin or even

flagyl? I know the people with DM use creams that help heal. I can

look that up of you want. Just email me.

Marge

> Ok, For some background have been on AP for four years....have

rashes which a dermi said is Psoriac Arthritis and he wanted to put

me on Enbrel ASAP....met with my RD a few days ago and she said that

unless the rashes are a major problem it would probably be best to

keep off Enbrel since it is a immune suppressor and there is risk of

infection, etc....any comments?

> Tony

>

>

[Guest guest]

In a message dated 3/12/2004 5:06:54 PM Eastern Standard Time, cynjan@...

writes:

.. I have been reading

other's posts regarding Enbrel and they all seem to have experienced at least

some

relief after just a couple of injections so I am beginning to get

discouraged!

I am wondering if there is anyone out there on Enbrel who took longer than 5

weeks to see results?! ~Cyndi

My doctor told me to five it a few months, Cyndi, Unfortunately there are a

few of us who did not experience relief from Enbrel and I was one of them. I

took it for 6 months. I am going to start the Humira when I get back from my

trip just in case of an adverse reaction.

JANET

[Guest guest]

Cyndi,

It took me about 10 weeks before I really could say I felt a

difference. And then it got better from there on. I'm not pain

free, but alot better then I was before I started taking it. I have

had a couple of infections since starting and have had to stop the

injections until the infections cleared up. I couln't wait to start

takin the shots again. By not being on it for 3-4 weeks I was back

to ground zero and was hurting back. So I know the Enbrel was

working. Give it some time before you decide it isn't working.

Good Luck Dick

[Guest guest]

cyndi

i also took enbrel for a little over 3 mos - but did not see any results -

I am mtx & prednisone now & going to start humira (still waiting to do first

injection - a little afraid - doc said it would sting - i am just a wuss)

remicade was not covered by my ins fully only at 80% so doc said try this first

-

i wish you luck with the enbrel - but just know there are other things out there

- we all just need to find the best combonation i guess

[Guest guest]

Hi, Tony!

Be careful about Enbrel-it IS an immune suppressant and infections can be

horrifically hard to get rid of.

Also, are you sure that these rashes aren't being caused by the AP? It's a

common side effect and when I get them I back off my AP for at least 3 days

until the rash is totally gone-One of my docs told me to get off for 3 weeks

even!! Might be what you should do. Docs are only human, and they do

misdiagnose...

Also, I have now cut down from daily AP to every other day. I was getting

rashes and my swelling and RA symptoms were way down, functioning way up:),

so when I cut down to every other day (after getting off altogether until

the rash remitted), I have not suffered a rash since. I've probable been

doing intermittent Tx for about 5-6 months now. I was on Doxy for 2 years,

then switched to Mino and Zithromax in Jun '02 and by 9-02, I could drive

again and in Feb '03, I could drive long distances again and now I lead an

almost normal life-I lead water aerobics, voluntarily, on Wed and Fri

evenings, and never have to use my prior mantra " I don't know if I can be

there, cause I never know if I'll be flaring or end up in a flare and need

major painkillers, etc.... "

I DO have severe deterioration in both hands, wrists, and both balls of my

feet. I tell people it's like I have broken hands and feet. I've lost

range of motion and I wear toe straighteners attached to pads for the balls

of my feet, and I cannot open a jar nor use any pressure on my wrists or

hands, for fear of intense pain, and poss. flares, but I am NOT in constant

pain, my hands and feet are NOT horribly swollen and disfigured, like

before. I CAN cook, clean my own house again, shop (for short periods of

time-hubby does most grocery shopping as the tile floors and constant use of

my hands and wrists is a double whammy), use the computer:), etc., etc.

So, if you can, maybe try giving yourself an AP break and seeing if the rash

clears, before taking Enbrel.

Good luck!!

Sally in Little Rock

rheumatic Enbrel

> Ok, For some background have been on AP for four years....have rashes

which a dermi said is Psoriac Arthritis and he wanted to put me on Enbrel

ASAP....met with my RD a few days ago and she said that unless the rashes

are a major problem it would probably be best to keep off Enbrel since it is

a immune suppressor and there is risk of infection, etc....any comments?

> Tony

>

>

[Guest guest]

Hi Steve,

I don't know why your doctor told you there is a waiting list for Enbrel. There used to be but they opened an extra laboratory and it is available now. I'd check with another Rhuematologist around you and see if your doctor might be wrong.

And................when there was a waiting list when I first started taking it, I just called the Enbrel company and told them I REALLY needed to try it and I got a very understanding person who gave me some I.D. number and I had it at my pharmacy within a few days. Give it a try. I'm not familiar with any of the other drugs except for Remicade and I told you I did not do well on it. Caroline takes Humira and seems to be pleased and I think Marcia still takes Kineret and is doing well on it also. These drugs all seem to be "hit and misses". I just wish I could get off the MTX but it doesn't seem likely that it will happen.

Ca. Carmen

[Guest guest]

I'll check out the Enbrel wait for you in the U.K.

Ca. Carmen