Enbrel

[Guest guest]

gee ,I really hope betz is okay. She is such a sweet hing. We are all

worried about her . I wish only the besy >Hope she will be okay. cathy from ma

[Guest guest]

> I really haven't been following the board too closely but noticed this

> post. I do not know Betz but it sounds like she is really ill and I

> wish her my best. What type of problem is she having?

> Janet

>

> [Editor's Note: Betz is having trouble with her vision, a UTI,

difficulty walking, dizziness, low blood pressure, etc. Kathy F.]

I am so sorry to hear this. I hope they discover that it is not

serious and she has a speedy recovery.

Janet

[Guest guest]

hooray..Orange you glad you feel better? sick joke.

[Guest guest]

Thanks dear! I'm home and on the road to recovery. In a week I

should feel alot better. Hospital food stinks. I could not tell if it

was dog food or cat chow so I switched to the vegetarian plan. That was

better except that they gave me a cottage cheese plate one day that

also included an orange, orange slices in syrup. orange jello and

orange juice. One friend said " Maybe tomorrow will be apple day " as a

joke but sure enough I got an apple and apple juice and apple jelly for

breakfast. Lol! 5 star it wasn't but the doctors were great and so was

the nursing. I felt well cared for and now I am taking meds to raisemy

blood pressure and will get physical therapy at home soon. Then I'll

start a new drug called Orencia. It's only approved for RA but my

Rheumy thinks she can get me approved. We'll see! I'm not done yet.

Love , Betz--- >

[Guest guest]

this is lorrie in seattle. i work with a very good friend who has been on the

orencia for a long time. she is in the study group. her rheumatism is pretty

severe. and its been a success for her. good luck.

Betsy Jack <itsbetsy@...> wrote: Thanks dear! I'm home and

on the road to recovery. In a week I

should feel alot better. Hospital food stinks. I could not tell if it

was dog food or cat chow so I switched to the vegetarian plan. That was

better except that they gave me a cottage cheese plate one day that

also included an orange, orange slices in syrup. orange jello and

orange juice. One friend said " Maybe tomorrow will be apple day " as a

joke but sure enough I got an apple and apple juice and apple jelly for

breakfast. Lol! 5 star it wasn't but the doctors were great and so was

the nursing. I felt well cared for and now I am taking meds to raisemy

blood pressure and will get physical therapy at home soon. Then I'll

start a new drug called Orencia. It's only approved for RA but my

Rheumy thinks she can get me approved. We'll see! I'm not done yet.

Love , Betz--- >

---------------------------------

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[Guest guest]

Hi Patty B.

Check the information on this website

http://www.enbrel.com/announcements/enbrel-medicare-coverage.jsp? or

call the toll free number listed on the website for their customer

service. Most of the drug companies also have programs for people

that can't afford needed medications but you will have to call and

ask about it. I also saw on there that the drug company offers some

free supplies. an ENBREL handbook—an introduction to ENBREL and how

it works, A booklet with step-by-step instructions for taking ENBREL,

A travel cooler for carrying ENBREL for short periods of time,

A travel card with tips for temporarily transporting ENBREL and

security information for air travel,

A SHARPS container,

ENBREL Prescribing Information and Patient Information,

A brochure and authorization form for Enliven Services, a free

support program for people who use ENBREL

It would be worth checking out...

Donna

[Guest guest]

Hi Patty,

I don't know how your case might differ from mine, but I was able to get on a

patient assistance program through the company that makes Enbrel. (Amgen Wyeth,

I think) Anyway, I have very little prescription coverage and the program is

supposed to help when the copay is more than you can afford. I received the info

from both my rheumy and my dermatologist. It might be worth calling the company

itself if you haven't already. I found they are very eager to help and I can

finally afford the meds.

Hope they can help you,

[Guest guest]

Hey Patty...did you sign up for the Enliven Services when you started

your Enbrel? It's a free service that gives you access to phone help

from a nurse with Enbrel and you'll recieve a sharps container, alcohol

prep pads and a monthly publication in the mail that I always found to

be helpful. I think that if you are having problems they even have

specialist to talk you through your health coverage options as well as

grants to assist you in getting Enbrel if you cannot afford it. If that

does not help, email me privately itsbetsy@... and I'll send you

some things that were sent to me should I need more help with my

medication funding. -Betz

[Guest guest]

This has been an interesting thread on my query about how you all

manage to pay for an expensive but helpful drug, Enbrel. Perhaps it

isn't exactly polite to ask about the financing part of treatment

programs. If so, I'd appreciate even a private post or two about it?

It was encouraging to read that some did experience a rapid response

to Enbrel injections.

When I tried to do a search on Enbrel, the response was that there are

about 5,000 posts regarding it and suggested the search be 'refined'.

Can someone suggest how the search should be worded?

I have learned so much from reading the posts over the years! A whole

LOT more than I've learned from my rheumy. It's encouraging to know

there are others who have experienced problems and are willing to share.

Thanks,

Patty B in a cool Pineywoods of East Texas

[Guest guest]

My son's rheumy expected almost immediate results, and she said she has a few

hundred peds patients on Enbrel. She was so confident in it that she started

tapering the methotrexate as soon as he started taking it. That turned out to

be a mistake, because he seems to need both. He did start feeling the Enbrel

early but not to the same extent you describe. His inflammation was too

out-of-control.

Now, for the bad news . . . paying for it. I'm afraid I'm not much help with

that. There was a special approval the doctor had to get from our insurance,

but my co-pay for Enbrel is $9/mo. I agree with you about not taking that IRA

money. After that's gone, then how do you pay for it, and what do you fall back

on in case of emergency? Have you asked your doctor if there are programs to

help pay for it?

Good Luck

PotterHarryMom

Mairyn 8

Connor 12

Cameron 14

" It is our choices, Harry, that show what we truly are, far more than our

abilities. " Albus Dumbledore

From: Harry Potter and the Chamber of Secrets

---------------------------------

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[Guest guest]

Just to help out maybe, contact the company who makes the drug, sometimes they

will help pay for hte copays, etc. and they also put you in touch with sources

that can help pay as well, so contact the maker and see if they will pay for the

co-pays, or put you in touch with organizations that will take up the cost.

[Guest guest]

" Betsy Jack " wrote:

>

> Hey Patty...did you sign up for the Enliven Services when you started

> your Enbrel?

Thanks for pointing that out. I signed on by phone. Very

friendly,helpful people.

I should know more later in the week.

PattyB in a cool Pineywoods of East Texas where the leaves are beautiful!

[Guest guest]

Patty,

My brother - 3 weeks

My mom - 3 months

My daughter - 5 weeks

-Louise

[ ] Enbrel

How long - on average - does it take for Enbrel to kick in? I've had

two doses and figured it might take time for it to start working.

Just wondering how fast it worked for others....

Patty

[Editor's Note: It varies from person to person, but it is not unusual for it to

take 2 - 3 months before it will really start to take hold. Two doses is not

enough to indicate one way or the other if it will work for you. Kathy F.]

________________________________________________________________________

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[Guest guest]

Wow! I'm so sorry to hear that so many people in your family have it.

But I do appreciate the feedback. Also - can you tell me how they knew

it kicked in?

Were the symptoms (pain, inflammation, etc) improved in short time frame

or more gradual? Just trying to figure out what to expect!

Thanks!

Patty

[ ] Enbrel

How long - on average - does it take for Enbrel to kick in? I've had

two doses and figured it might take time for it to start working.

Just wondering how fast it worked for others....

Patty

[Editor's Note: It varies from person to person, but it is not unusual

for it to take 2 - 3 months before it will really start to take hold.

Two doses is not enough to indicate one way or the other if it will work

for you. Kathy F.]

__________________________________________________________

Check out the new AOL. Most comprehensive set of free safety and

security tools, free access to millions of high-quality videos from

across the web, free AOL Mail and more.

[Guest guest]

Thanks, Kathy as well!

[ ] Enbrel

How long - on average - does it take for Enbrel to kick in? I've had

two doses and figured it might take time for it to start working.

Just wondering how fast it worked for others....

Patty

[Editor's Note: It varies from person to person, but it is not unusual

for it to take 2 - 3 months before it will really start to take hold.

Two doses is not enough to indicate one way or the other if it will work

for you. Kathy F.]

__________________________________________________________

[Guest guest]

Patty,

My brother knew it was working because he was able to put on his pants by

himself. Pull up the zipper and button the pants. Before the Enbrel my SIL or

my mom had to dress him. His PA is mostly in his fingers and toes. He calls

Enbrel a miracle drug. Because of Enbrel he can continue to work and serve in

the military - even going to Iraq. He said he woke up one morning and felt

great. Couldn't believe it himself.

My mom has RA. She was on Enbrel and knew it was working when she was able to

lift up her leg more than a few inches. She was discouraged in the beginning

because it didn't kick in as fast as my brother's did. He kept telling her not

to give up and wait. She was on Enbrel for 6 years. My dad passed away in 2004

and she had a very bad flare up due to strees. Since then she has been on

Remicade. When on Enbrel she took it twice a week and was hardly ever in pain.

With Remicade she knows when she is due for treatment, her hip really starts to

hurt. Once the Enbrel kicked in, she felt good really fast.

My daughter, the newest Enbrel taker in the family knew it was working because

she was able to walk without her crutches. She was on them about 2 1/2 months.

Also her entire right leg was sensitive to the touch. If you sat too close to

her, she would scream in pain. Now I can touch her leg and she hardly flinches.

She cannot wear jeans, because the weight of the material on her hips is too

heavy, but I think she will be back to wearing them soon. She can now wear

socks. She couldn't before the Enbrel kicked in because the pressure of the

sock was too much. She is still wearing open back slippers. Shoes and sneakers

are still out. But we are getting there. Her results were gradual. She was

sick and had to delay her fourth injection, she quickly realized that Enbrel was

working for her then. Her pain was getting worse and she couldn't wait to get

the okay from her Rheumy to take another dose. Within a week she was feeling

much better.

My brother told me everyone is different. He has been on Enbrel for a very,

very long time. He knows quite a few people who are on it. Everyone's waiting

period is different. My daughter's rheumy told us to be patient, it could take

up to 3 months to kick in.

Good luck,

Louise

RE: [ ] Enbrel

Wow! I'm so sorry to hear that so many people in your family have it.

But I do appreciate the feedback. Also - can you tell me how they knew

it kicked in?

Were the symptoms (pain, inflammation, etc) improved in short time frame

or more gradual? Just trying to figure out what to expect!

Thanks!

Patty

[Guest guest]

Louise,

Thank you so much for sharing. It helps so much to hear about other

people's experiences with a drug. I'm so glad it's working for your

brother and mother and your daughter. Is your brother still in Iraq?

How amazing that - in the midst of all his pain and coping with PA - he

chose to serve his country as a member of the military. Now that is a

hero!

And I'm realizing that there are more sides to PA than I ever imagined.

Your daughter's case, in particular, sounds very painful. I sincerely

hoping she is able to get into those jeans soon!

Take care and thanks again!

Patty

Re: [ ] Enbrel

Patty,

My brother knew it was working because he was able to put on his pants

by himself. Pull up the zipper and button the pants. Before the Enbrel

my SIL or my mom had to dress him. His PA is mostly in his fingers and

toes. He calls Enbrel a miracle drug. Because of Enbrel he can continue

to work and serve in the military - even going to Iraq. He said he woke

up one morning and felt great. Couldn't believe it himself.

My mom has RA. She was on Enbrel and knew it was working when she was

able to lift up her leg more than a few inches. She was discouraged in

the beginning because it didn't kick in as fast as my brother's did. He

kept telling her not to give up and wait. She was on Enbrel for 6 years.

My dad passed away in 2004 and she had a very bad flare up due to

strees. Since then she has been on Remicade. When on Enbrel she took it

twice a week and was hardly ever in pain. With Remicade she knows when

she is due for treatment, her hip really starts to hurt. Once the Enbrel

kicked in, she felt good really fast.

My daughter, the newest Enbrel taker in the family knew it was working

because she was able to walk without her crutches. She was on them about

2 1/2 months. Also her entire right leg was sensitive to the touch. If

you sat too close to her, she would scream in pain. Now I can touch her

leg and she hardly flinches. She cannot wear jeans, because the weight

of the material on her hips is too heavy, but I think she will be back

to wearing them soon. She can now wear socks. She couldn't before the

Enbrel kicked in because the pressure of the sock was too much. She is

still wearing open back slippers. Shoes and sneakers are still out. But

we are getting there. Her results were gradual. She was sick and had to

delay her fourth injection, she quickly realized that Enbrel was working

for her then. Her pain was getting worse and she couldn't wait to get

the okay from her Rheumy to take another dose. Within a week she was

feeling much better.

My brother told me everyone is different. He has been on Enbrel for a

very, very long time. He knows quite a few people who are on it.

Everyone's waiting period is different. My daughter's rheumy told us to

be patient, it could take up to 3 months to kick in.

Good luck,

Louise

[Guest guest]

Patty,

My brother is now home. Getting the Enbrel over to Iraq is another story!

What I have learned from being a member of this group is - PA is as unique as

the person who is affected by it. When my daughter was diagnosed, I wasn't with

her. My husband was. Now because my brother has it, I was familiar with it.

His symptoms are so very different than na's so I was convinced that the

Dr. was wrong. I called him and spoke to his assistant at first. The Dr. got

on the phone when he realized that I was asking very precise questions. He told

me to get a second opinion if it would make me feel better. He is one of the

top 100 in the country so I had confidence in him. Instead I made an

appointment to see him the next day. We sat down and discussed the MANY facets

of this disease. I agreed to give the Enbrel 3 months to work. I wasn't afraid

of my daughter using it because I was familiar with it. It really has made life

for my brother bearable. So it worked in a few weeks for her and she is feeling

much, much better.

Real quick, I'll give my brother's story to you. He was in Desert Storm in

1991. He came home with a rash on his scalp and a few weeks later his ears

starting draining. A blackish fluid was coming out. He went to dr's. and they

told him he had Gulf War Syndrome. Went to a derm. and she told him he has

psoriasis, but didn't know what was going on with his ears. During the next

year he went to many doc's. No one knew what was going on. Woke up on morning

with his fingers the size of sticks of butter. Pain everywhere and he could

barely move. Went to his primary. The primary sent him to Rheumy. Rheumy took

one look at his chart, asked, Do you have psoriasis? When told yes, diagnosed

him with PA from across the room. Never came within 10 feet of my brother. My

brother thought he was nuts and went to 4 other rheumies over the next year.

All said the same thing. My brother went back to dr #1. Dr. asked where he

was? My brother told him that he thought he was nuts because of the way he

diagnosed him. After going to the other docs he said he went back to dr. #1

because he had the best rep. Also top 100 in the country. With the same dr.

ever since.

na was diagnosed much in the same way. Look at chart, questioned about P -

close chart, says you have PA.

Couldn't believe they were diagnosed the same way by two different doctors.

Please be patient, I am positive the Enbrel will work. My daughter had her

doubts, but now she is a loyal user.

-Louise

Re: [ ] Enbrel

Patty,

My brother knew it was working because he was able to put on his pants

by himself. Pull up the zipper and button the pants. Before the Enbrel

my SIL or my mom had to dress him. His PA is mostly in his fingers and

toes. He calls Enbrel a miracle drug. Because of Enbrel he can continue

to work and serve in the military - even going to Iraq. He said he woke

up one morning and felt great. Couldn't believe it himself.

My mom has RA. She was on Enbrel and knew it was working when she was

able to lift up her leg more than a few inches. She was discouraged in

the beginning because it didn't kick in as fast as my brother's did. He

kept telling her not to give up and wait. She was on Enbrel for 6 years.

My dad passed away in 2004 and she had a very bad flare up due to

strees. Since then she has been on Remicade. When on Enbrel she took it

twice a week and was hardly ever in pain. With Remicade she knows when

she is due for treatment, her hip really starts to hurt. Once the Enbrel

kicked in, she felt good really fast.

My daughter, the newest Enbrel taker in the family knew it was working

because she was able to walk without her crutches. She was on them about

2 1/2 months. Also her entire right leg was sensitive to the touch. If

you sat too close to her, she would scream in pain. Now I can touch her

leg and she hardly flinches. She cannot wear jeans, because the weight

of the material on her hips is too heavy, but I think she will be back

to wearing them soon. She can now wear socks. She couldn't before the

Enbrel kicked in because the pressure of the sock was too much. She is

still wearing open back slippers. Shoes and sneakers are still out. But

we are getting there. Her results were gradual. She was sick and had to

delay her fourth injection, she quickly realized that Enbrel was working

for her then. Her pain was getting worse and she couldn't wait to get

the okay from her Rheumy to take another dose. Within a week she was

feeling much better.

My brother told me everyone is different. He has been on Enbrel for a

very, very long time. He knows quite a few people who are on it.

Everyone's waiting period is different. My daughter's rheumy told us to

be patient, it could take up to 3 months to kick in.

Good luck,

Louise

________________________________________________________________________

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[Guest guest]

My understanding is that Biologics such as Enbrel and Humira are also DMARDs

since they modify the disease, albeit differently than MTX. MTX and Arava

are DMARDs, but NOT biologics since they alter the disease but not via the

same biologic processes as the biologics. Ergo, they are all DMARDs but they

are not all biologics. Isn't confusion a lovely thing for those of us with

brain fog?

Kathy F.

In a message dated 4/5/2007 1:01:13 P.M. Eastern Daylight Time,

adc1979@... writes:

It appears that there is some confusion about the classes of meds we

use to battle PA..

That quote (along with many articles about the research process and the

manufacturer of Enbrel and Humira) indicates that Enbrel is a biologic

response modifier not a DMARD... it behaves differently. DMARDS

actually attack the disease to stop it in it's tracks if you're lucky

whereas Biologic Response Modifiers actually alter our own biologic

processes to stop the processes within our bodies from being vulnerable

to another attack.... There is a difference but since I'm not a

scientist, I cannot explain it. The manufacturers sites have good

explanations as well. The FDA classifies them as different families of

drugs as well.

I appreciate it! Your quote simplifies things very nicely.

************************************** See what's free at http://www.aol.com.

[Guest guest]

Hi Jackie,

My name is Nick I have been on the Enbrel Sure Click for 5 weeks and not have

seen any difference but my rheumy told for some people it may take a few months

before you see an improvement. If that does not work then you could try Humira.

Good Luck

Nick

[ ] Enbrel

Hi there! My name is Jackie. I'm 31 years old and I have been

suffering with PA for 11 years or so.

My doctor recently started me on Enbrel injections (once a week) along

with MTX and folic acid. I was told by my doctor that I should notice a

difference in the way I feel after I have had 2-3 injections. I just

had my second one two days ago, and I still feel the same. Sore and

stiff all over, fatigued, and itching like crazy from the psorasis. I

have psorasis on 90% of my body. It's horrible.

Have any of you ever tried Enbrel? Did it work for you? I could

really use some help or advice.

Thanks.

[Editor's Note: Hi, Jackie and welcome to the group. We have over 3,000 members

and many of us have tried, or are on, Enbrel. There are lots of threads in our

archives on this medication. PA is a challenging disease and it affects every

person differently. In addition, each person responds to medications in their

own unique way. For many of us, Enbrel took up to two months (8 injections)

before we started to see it begin to work its magic. For some of us, Enbrel has

enabled us to return to normal, or near normal, lives. For others, Enbrel has

helped stem the spread of the disease, but it has not been able to reverse the

damage already done. For some, Enbrel has not helped at all and, for a small

percentage, the side effects were significant. Fortunately, very few people

suffer serious side effects, even after using Enbrel for more than 5 years.

Since you have had PA since your early 20s or late teens, it is possible that

you have already suffered permanent joint damage

which is not something Enbrel can repair. Give it 6-8 weeks and if you do not

begin to see some positive changes, talk to your rheumatologist about trying

something else. Kathy F.]

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[Guest guest]

It appears that there is some confusion about the classes of meds we

use to battle PA..

That quote (along with many articles about the research process and the

manufacturer of Enbrel and Humira) indicates that Enbrel is a biologic

response modifier not a DMARD... it behaves differently. DMARDS

actually attack the disease to stop it in it's tracks if you're lucky

whereas Biologic Response Modifiers actually alter our own biologic

processes to stop the processes within our bodies from being vulnerable

to another attack.... There is a difference but since I'm not a

scientist, I cannot explain it. The manufacturers sites have good

explanations as well. The FDA classifies them as different families of

drugs as well.

I appreciate it! Your quote simplifies things very nicely.

[Guest guest]

LOL, a researcher friend of mine says that much of the confusion has to do

with who's on first.

DMARDS and Biologics may have some of the same results, but they are not the

same and do not have the same actions and are classified seperately..(i.e.

anti-TNF biologics behave completely differently than MTX at the

cellular/chemical level and at the disease process stage) altering the

action of the disease in progress by stopping disease action is different

than altering the action of the disease in progress by manipulation within

the process which is different from prevention of exacerbation.... sort of

like using an antiseizure med or an SSRI for depression. .. six of one,

half a dozen of another but there is a differentiation that divides them,

how they work and their classification of drug.

Delane

Re: [ ] Re: Enbrel

My understanding is that Biologics such as Enbrel and Humira are also

DMARDs

since they modify the disease, albeit differently than MTX. MTX and Arava

are DMARDs, but NOT biologics since they alter the disease but not via the

same biologic processes as the biologics. Ergo, they are all DMARDs but

they

are not all biologics. Isn't confusion a lovely thing for those of us with

brain fog?

Kathy F.

In a message dated 4/5/2007 1:01:13 P.M. Eastern Daylight Time,

adc1979@... writes:

It appears that there is some confusion about the classes of meds we

use to battle PA..

That quote (along with many articles about the research process and the

manufacturer of Enbrel and Humira) indicates that Enbrel is a biologic

response modifier not a DMARD... it behaves differently. DMARDS

actually attack the disease to stop it in it's tracks if you're lucky

whereas Biologic Response Modifiers actually alter our own biologic

processes to stop the processes within our bodies from being vulnerable

to another attack.... There is a difference but since I'm not a

scientist, I cannot explain it. The manufacturers sites have good

explanations as well. The FDA classifies them as different families of

drugs as well.

I appreciate it! Your quote simplifies things very nicely.

************************************** See what's free at

http://www.aol.com.

[Guest guest]

, I think you're right! It is much harder on the parents than the kids! My

son is 14 years old and just started 3 weeks ago. He gets the Enbrel once per

week . Dr. Kastner told us that we wouldn't really see results before 4 to 6

weeks so we are still new at this. PJ just got his 3rd shot on Monday and

started a mild episode that night so I'm crossing my fingers that we don't see

another any time soon. Good luck to both of us.

Pat Bombardier

p.s. I know that Enbrel has been tried on many kids with the genetic

disorders, fmf, traps and hids (my son has fmf) but I hadn't heard of it being

used for . I can't imagine an insurance company that would approve it for

that!

---------------------------------

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[Guest guest]

I can say from experience that Enbrel was not paid for by TUFTS on my end!!!@

Even as sick as BReana was! We got it thru compassionate use!

Pat It took us almost two months before we saw solid results on the ENbrel.!

We just returned from our first very very positive HEALTHY VISITS! to NIH!!!!

Breana has never been as well as she is currently.....I just pray it stays with

her! Kineret so far so good!

Re: enbrel

, I think you're right! It is much harder on the parents than the kids!

My son is 14 years old and just started 3 weeks ago. He gets the Enbrel once per

week . Dr. Kastner told us that we wouldn't really see results before 4 to 6

weeks so we are still new at this. PJ just got his 3rd shot on Monday and

started a mild episode that night so I'm crossing my fingers that we don't see

another any time soon. Good luck to both of us.

Pat Bombardier

p.s. I know that Enbrel has been tried on many kids with the genetic

disorders, fmf, traps and hids (my son has fmf) but I hadn't heard of it being

used for . I can't imagine an insurance company that would approve it for

that!

---------------------------------

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Check outnew cars at Autos.

[Guest guest]

-

we did not have any problems with the insurance company. It is

expensive, it will cost us $150.00 every 2 months. I think it is

worth it if it makes him feel better.

mom of preston 3

-- In , Bombardier <petish44@...> wrote:

>

> , I think you're right! It is much harder on the parents than

the kids! My son is 14 years old and just started 3 weeks ago. He

gets the Enbrel once per week . Dr. Kastner told us that we wouldn't

really see results before 4 to 6 weeks so we are still new at this.

PJ just got his 3rd shot on Monday and started a mild episode that

night so I'm crossing my fingers that we don't see another any time

soon. Good luck to both of us.

>

> Pat Bombardier

>

> p.s. I know that Enbrel has been tried on many kids with the

genetic disorders, fmf, traps and hids (my son has fmf) but I hadn't

heard of it being used for . I can't imagine an insurance

company that would approve it for that!

>

>

> ---------------------------------

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Autos.

>

>