Enbrel

[Guest guest]

Hi ,

my daughter has been on Enbrel for over a year; she has trouble with fatigue but

the doctor told us that the fatigue is really a side effect of the jra, (and

some other health issues) not the Enbrel.  Is the fatigue new for Jordan?

I hope he gets to feeling much better really soon!

(, poly, pidd)

From: Mathena@... <Mathena@...>

Subject: Enbrel

" Utah Kids " <utahkids >,

Date: Sunday, March 29, 2009, 3:48 PM

Jordon started his Enbrel shots on Thursday 26th, and he has been

sleeping in the middle of the day, everyday, and he has had some headaches are

these common side effects does anyone know?

, Bryon, Jordon 9 (Type 1 Diabetes Mellitus, SPD, Epilepsy, JRA, DD),

7 (Epilepsy, Ketogenic Diet, CMV, ODD, DD)

[Guest guest]

Its new, he has had JRA for over a year now. His Doctor told us his headaches

can be a side effect from the Enbrel but not the Fatigue.

He does have many other Medical Issues, however with the Fatigue being new I

don't think its linked to any of them.

We are just going to watch him for the next couple days.

From: nancy barnes

Sent: Monday, March 30, 2009 11:30 PM

Subject: Re: Enbrel

Hi ,

my daughter has been on Enbrel for over a year; she has trouble with fatigue but

the doctor told us that the fatigue is really a side effect of the jra, (and

some other health issues) not the Enbrel. Is the fatigue new for Jordan?

I hope he gets to feeling much better really soon!

(, poly, pidd)

From: Mathena@... <Mathena@...>

Subject: Enbrel

" Utah Kids " <utahkids >,

Date: Sunday, March 29, 2009, 3:48 PM

Jordon started his Enbrel shots on Thursday 26th, and he has been sleeping in

the middle of the day, everyday, and he has had some headaches are these common

side effects does anyone know?

, Bryon, Jordon 9 (Type 1 Diabetes Mellitus, SPD, Epilepsy, JRA, DD),

7 (Epilepsy, Ketogenic Diet, CMV, ODD, DD)

[Guest guest]

Hi All,

I just had to tell you all my good news.

As most of you know, I started on Enbrel recently, I have had 4 injections.

 

Well, today I have managed to get my wedding rings on for the first time in 5

years. I have never had a pain free day for about 12 years and I can hardly

believe my luck. I just wanted to share this with those who are continuing to

struggle, desperately trying to find the right cocktail. I never thought I

would, as I was running out of options. The swelling in my legs has gone,my

feet,hands,shoulders,and even my knees...no pain!!!!!!

 

If I only get a month before it stops working, then I will count my blessings.

I can only take each day as it comes, as each day is a bonus.

 

I am only too aware that for a lot of you, today is like any other day. But

please don't give up. Today is a day I could only dream about, but I pray you

all get your day too and real soon.

 

Love and hugs

x

From: catherine <c.ranioloverizon (DOT) net>

Subject: [ ] silly topic

@gro ups.com

Date: Monday, 6 April, 2009, 7:42 PM

This is such a small thing but it lifted my spirits.

After 3 plus years of wearing no make up and feeling quite " frumpy " ,

I found a solution.

There are new mascaras with very fat wands. I was able to put mascara on. It is

a very nice, small, emotional lift.

Now let's hope i can remove it tonight....grin

[Guest guest]

Great news, , I hope it continues to work for you for a long, long time!

Hugs

Elaine

[ ] silly topic

@gro ups.com

Date: Monday, 6 April, 2009, 7:42 PM

This is such a small thing but it lifted my spirits.

After 3 plus years of wearing no make up and feeling quite " frumpy " ,

I found a solution.

There are new mascaras with very fat wands. I was able to put mascara on. It

is a very nice, small, emotional lift.

Now let's hope i can remove it tonight....grin

[Guest guest]

Congratulations, ! I'm so glad that Enbrel is working for you and

hope it will continue to gie you relief. I've been on it for over five

years, and it still works wonderfully well. I hope that you will have

the same success with it.

Sue

On Apr 7, 2009, at 10:27 AM, Ledsom wrote:

> Hi All,

> I just had to tell you all my good news.

> As most of you know, I started on Enbrel recently, I have had 4

> injections.

>

> Well, today I have managed to get my wedding rings on for the first

> time in 5 years. I have never had a pain free day for about 12 years

> and I can hardly believe my luck. I just wanted to share this with

> those who are continuing to struggle, desperately trying to find the

> right cocktail. I never thought I would, as I was running out of

> options. The swelling in my legs has gone,my

> feet,hands,shoulders,and even my knees...no pain!!!!!!

>

[Guest guest]

Hi :

What a glorious and happy letter from you today. I am so thrilled with

the results of the Enbrel for you. You must feel on top of the world.

It is so amazing when we find something that works so good for us, and

then be pain free!!!!! I know you are enjoying every minute today.

Wishing you continued good luck with the Enbrel, and many pain free days

ahead. I am so happy for you .

Hugs,

Barbara

>

> > Hi All,

> > I just had to tell you all my good news.

> > As most of you know, I started on Enbrel recently, I have had 4

> > injections.

> >

> > Well, today I have managed to get my wedding rings on for the first

> > time in 5 years. I have never had a pain free day for about 12 years

> > and I can hardly believe my luck. I just wanted to share this with

> > those who are continuing to struggle, desperately trying to find the

> > right cocktail. I never thought I would, as I was running out of

> > options. The swelling in my legs has gone,my

> > feet,hands,shoulders,and even my knees...no pain!!!!!!

> >

>

[Guest guest]

That's AWESOME!!! I'm so glad you wrote this ! I need to hear some success

stories. I was beginning to wonder if anyone with RA actually feels better on

these meds. My doctor keeps telling me, as he prescribes one drug after the

next, that " I think you will really like this drug... " only to be completely

disappointed. And when I log on to most of my various support groups, rarely is

there a person singing the praise of pain free days... so it kinda makes you

wonder if it exists. I only pray one day I will find what you have found. I

wish you continued success and pain free days FOREVER!!! We all deserve it...

Jill

>

> From: catherine <c.ranioloverizon (DOT) net>

> Subject: [ ] silly topic

> @gro ups.com

> Date: Monday, 6 April, 2009, 7:42 PM

>

> This is such a small thing but it lifted my spirits.

> After 3 plus years of wearing no make up and feeling quite " frumpy " ,

> I found a solution.

> There are new mascaras with very fat wands. I was able to put mascara on. It

is a very nice, small, emotional lift.

> Now let's hope i can remove it tonight....grin

>

>

[Guest guest]

I'm so glad that you've found something that works for you ! That's

fantastic!!

Lori

http://home.comcast.net/~queenstitcher/

http://stitchingqueen.multiply.com

[Guest guest]

My son did fine on enbrel, as far as infections go. He switched to humira 10

months ago and since that time he has had strep throat twice, bronchitis,

and two nasty skin infections. The up side is that when he is able to take

the humira, it does seem to work well for him.

Its a hard thing to weigh the consequences of the medication. Unfortunately,

this is just something you and the doctor will need to decide. Sounds like

Jordan hasn't been on enbrel enough to find out if it will work for him. I'm

sorry.

Hope he feels better and that enbrel kicks in.

On Wed, Apr 22, 2009 at 3:19 AM, <Mathena@...> wrote:

>

>

> For anyone on Enbrel or if your children on it.

>

> Jordon had 2 shots of Enbrel then got strep, so we had to put off his 3rd

> shot, it was 5 days late. We had to wait till he had no fever before giving

> it to him. His 3rd shot was last wed. And now yesterday Jordon went to

> school fine, and in the middle of the day his nurse called because he is

> sick again, we brought him home, and again he has Fevers, and is vomiting.

> Now I know the doctor said that the Enbrel would lower his immune system,

> but I didn't think he would be getting so sick, this often. And he's

> catching both these incidents of sickness, from school.

>

> I was wondering if any of you or your children have gotten so sick while on

> the Enbrel. He is suppose to get his 4th shot of Enbrel today the 22nd, but

> he won't be able to because of the fevers. We will be taking him to see his

> pediatrician in the morning, was just wondering about anyone else's

> experience with Enbrel.

>

>

>

>

[Guest guest]

has been on Enbrel and MTX combo for almost 7 yrs now and he rarely ever

gets sick.He's only missed school 1 day this year.

School is a great place to pick up germs.Sounds like a coincidence to me.Luckily

school is almost over so hang in there.

Yeah,the meds can lower the immune system,thats what they are supposed to do

since our kiddos have over active immune systems.The trick is finding the

balance.

Keep us updated and remember when the immune system is weakened from one illness

it's easier for the body to catch another one.The best thing is to keep washing

those hands.

Becki and 10 systemic onset since 01

________________________________

From: " Mathena@... " <Mathena@...>

Sent: Wednesday, April 22, 2009 2:19:43 AM

Subject: Enbrel

For anyone on Enbrel or if your children on it.

Jordon had 2 shots of Enbrel then got strep, so we had to put off his 3rd shot,

it was 5 days late. We had to wait till he had no fever before giving it to him.

His 3rd shot was last wed. And now yesterday Jordon went to school fine, and in

the middle of the day his nurse called because he is sick again, we brought him

home, and again he has Fevers, and is vomiting.

Now I know the doctor said that the Enbrel would lower his immune system, but I

didn't think he would be getting so sick, this often. And he's catching both

these incidents of sickness, from school.

I was wondering if any of you or your children have gotten so sick while on the

Enbrel. He is suppose to get his 4th shot of Enbrel today the 22nd, but he won't

be able to because of the fevers. We will be taking him to see his pediatrician

in the morning, was just wondering about anyone else's experience with Enbrel.

[Guest guest]

Jordon also has Type 1 Diabetes Mellitus, which is why he isn't on some other

meds. I am hoping that this summer will be better since he will only be in ESY

for 15 days. His fever came down today to 99.2 and he stopped vomiting, so his

DR said we should still give him his Enbrel shot today.

We don't even know yet if the Enbrel is working for him, he hasn't been on it

consistent enough to tell. Jordon has missed so much school this year that his

teacher almost failed him. I want the Enbrel to work so that he won't be in pain

anymore and not swollen, and so he can be at school learning and not sick at

home

From: Becki Larson

Sent: Wednesday, April 22, 2009 11:09 AM

Subject: Re: Enbrel

has been on Enbrel and MTX combo for almost 7 yrs now and he rarely ever

gets sick.He's only missed school 1 day this year.

School is a great place to pick up germs.Sounds like a coincidence to me.Luckily

school is almost over so hang in there.

Yeah,the meds can lower the immune system,thats what they are supposed to do

since our kiddos have over active immune systems.The trick is finding the

balance.

Keep us updated and remember when the immune system is weakened from one illness

it's easier for the body to catch another one.The best thing is to keep washing

those hands.

Becki and 10 systemic onset since 01

________________________________

From: " Mathena@... " <Mathena@...>

Sent: Wednesday, April 22, 2009 2:19:43 AM

Subject: Enbrel

For anyone on Enbrel or if your children on it.

Jordon had 2 shots of Enbrel then got strep, so we had to put off his 3rd shot,

it was 5 days late. We had to wait till he had no fever before giving it to him.

His 3rd shot was last wed. And now yesterday Jordon went to school fine, and in

the middle of the day his nurse called because he is sick again, we brought him

home, and again he has Fevers, and is vomiting.

Now I know the doctor said that the Enbrel would lower his immune system, but I

didn't think he would be getting so sick, this often. And he's catching both

these incidents of sickness, from school.

I was wondering if any of you or your children have gotten so sick while on the

Enbrel. He is suppose to get his 4th shot of Enbrel today the 22nd, but he won't

be able to because of the fevers. We will be taking him to see his pediatrician

in the morning, was just wondering about anyone else's experience with Enbrel.

[Guest guest]

,

Hang in there! It's hard to have your child miss a lot of school. Lucy has

missed a lot, but she was a kindergarten repeat for a whole lot of other

reasons, and now I can see that God in his wisdom, knew what he was doing.

She missed so much school this year because of jra, and she is still at the

top of her class.

She's been on Enbrel since February and she hasn't been sick at all. I

agree with what someone else said, that once they catch something, it is

hard for the immune system to fight off the next thing. Hopefully he can

get good and well before he goes back to school.

Amy and Lucy, 7, poly

On Wed, Apr 22, 2009 at 2:54 PM, <Mathena@...> wrote:

>

>

> Jordon also has Type 1 Diabetes Mellitus, which is why he isn't on some

> other meds. I am hoping that this summer will be better since he will only

> be in ESY for 15 days. His fever came down today to 99.2 and he stopped

> vomiting, so his DR said we should still give him his Enbrel shot today.

> We don't even know yet if the Enbrel is working for him, he hasn't been on

> it consistent enough to tell. Jordon has missed so much school this year

> that his teacher almost failed him. I want the Enbrel to work so that he

> won't be in pain anymore and not swollen, and so he can be at school

> learning and not sick at home

>

>

>

> From: Becki Larson

> Sent: Wednesday, April 22, 2009 11:09 AM

> < %40>

> Subject: Re: Enbrel

>

> has been on Enbrel and MTX combo for almost 7 yrs now and he rarely

> ever gets sick.He's only missed school 1 day this year.

> School is a great place to pick up germs.Sounds like a coincidence to

> me.Luckily school is almost over so hang in there.

> Yeah,the meds can lower the immune system,thats what they are supposed to

> do since our kiddos have over active immune systems.The trick is finding the

> balance.

> Keep us updated and remember when the immune system is weakened from one

> illness it's easier for the body to catch another one.The best thing is to

> keep washing those hands.

> Becki and 10 systemic onset since 01

>

> ________________________________

> From: " Mathena@... <Mathena%40live.com> " <

> Mathena@... <Mathena%40live.com>>

> < %40>

> Sent: Wednesday, April 22, 2009 2:19:43 AM

> Subject: Enbrel

>

> For anyone on Enbrel or if your children on it.

>

> Jordon had 2 shots of Enbrel then got strep, so we had to put off his 3rd

> shot, it was 5 days late. We had to wait till he had no fever before giving

> it to him. His 3rd shot was last wed. And now yesterday Jordon went to

> school fine, and in the middle of the day his nurse called because he is

> sick again, we brought him home, and again he has Fevers, and is vomiting.

> Now I know the doctor said that the Enbrel would lower his immune system,

> but I didn't think he would be getting so sick, this often. And he's

> catching both these incidents of sickness, from school.

>

> I was wondering if any of you or your children have gotten so sick while on

> the Enbrel. He is suppose to get his 4th shot of Enbrel today the 22nd, but

> he won't be able to because of the fevers. We will be taking him to see his

> pediatrician in the morning, was just wondering about anyone else's

> experience with Enbrel.

>

>

>

>

[Guest guest]

His Teacher was going fail him for this last term, until she found out all they

were doing in tutoring, he has been in Home/Hospital program since October, we

did the HH because he was missing so much school and they come and tutor him at

our house 2hrs every week.

I did actually ask at the end of his Kindergarten year if they would hold him

back if he ever needed, they told me they usually don't hold back children that

are on IEP's unless the parents tell them to. Now he is in the 3rd grade, never

have been held back yet. BUT this year he has missed more school than ever,

litterly being home sick more than being in school. That I am thinking of it.

They are doing some testing in may for him, and if he hasn't made enough

progress I think we will hold him back.

He has so many issues going on besides the JRA that everything combined is just

making him miss a lot more school.

On being more sick since the Enbrel started, we arent going to stop it, unless

he gets sick during the summer also, being away from school and all those germs

I am thinking he wont be as sick you know?

From: Amy Hendrickson

Sent: Wednesday, April 22, 2009 5:24 PM

Subject: Re: Enbrel

,

Hang in there! It's hard to have your child miss a lot of school. Lucy has

missed a lot, but she was a kindergarten repeat for a whole lot of other

reasons, and now I can see that God in his wisdom, knew what he was doing.

She missed so much school this year because of jra, and she is still at the

top of her class.

She's been on Enbrel since February and she hasn't been sick at all. I

agree with what someone else said, that once they catch something, it is

hard for the immune system to fight off the next thing. Hopefully he can

get good and well before he goes back to school.

Amy and Lucy, 7, poly

On Wed, Apr 22, 2009 at 2:54 PM, <Mathena@...> wrote:

>

>

> Jordon also has Type 1 Diabetes Mellitus, which is why he isn't on some

> other meds. I am hoping that this summer will be better since he will only

> be in ESY for 15 days. His fever came down today to 99.2 and he stopped

> vomiting, so his DR said we should still give him his Enbrel shot today.

> We don't even know yet if the Enbrel is working for him, he hasn't been on

> it consistent enough to tell. Jordon has missed so much school this year

> that his teacher almost failed him. I want the Enbrel to work so that he

> won't be in pain anymore and not swollen, and so he can be at school

> learning and not sick at home

>

>

>

> From: Becki Larson

> Sent: Wednesday, April 22, 2009 11:09 AM

> < %40>

> Subject: Re: Enbrel

>

> has been on Enbrel and MTX combo for almost 7 yrs now and he rarely

> ever gets sick.He's only missed school 1 day this year.

> School is a great place to pick up germs.Sounds like a coincidence to

> me.Luckily school is almost over so hang in there.

> Yeah,the meds can lower the immune system,thats what they are supposed to

> do since our kiddos have over active immune systems.The trick is finding the

> balance.

> Keep us updated and remember when the immune system is weakened from one

> illness it's easier for the body to catch another one.The best thing is to

> keep washing those hands.

> Becki and 10 systemic onset since 01

>

> ________________________________

> From: " Mathena@... <Mathena%40live.com> " <

> Mathena@... <Mathena%40live.com>>

> < %40>

> Sent: Wednesday, April 22, 2009 2:19:43 AM

> Subject: Enbrel

>

> For anyone on Enbrel or if your children on it.

>

> Jordon had 2 shots of Enbrel then got strep, so we had to put off his 3rd

> shot, it was 5 days late. We had to wait till he had no fever before giving

> it to him. His 3rd shot was last wed. And now yesterday Jordon went to

> school fine, and in the middle of the day his nurse called because he is

> sick again, we brought him home, and again he has Fevers, and is vomiting.

> Now I know the doctor said that the Enbrel would lower his immune system,

> but I didn't think he would be getting so sick, this often. And he's

> catching both these incidents of sickness, from school.

>

> I was wondering if any of you or your children have gotten so sick while on

> the Enbrel. He is suppose to get his 4th shot of Enbrel today the 22nd, but

> he won't be able to because of the fevers. We will be taking him to see his

> pediatrician in the morning, was just wondering about anyone else's

> experience with Enbrel.

>

>

>

>

[Guest guest]

,

I would be tempted to keep him home from ESY if you are worried about

infection. I would guess that the school is telling you that he needs it to

catch up, but I teach ESY and I know that kids are on summer rules. I think

for a lot of them, there is not a lot of progress. (I teach severe and

profound kids, so our measure of progress is different.) Anyway, even if he

is on an IEP that says he should have ESY, it is not mandatory. And it's

your decision if you want to hold him back. It did Lucy wonders to be held

back a year. I don't think she would have been able to cope with a

diagnosis of jra and it's onslaught, and the schoolwork, without the added

maturity of another year.

I'm glad they are providing him with home services. You can always keep

doing that too. I guess my point to you is that he will be alright. Don't

let some dumb old teacher that says she's going to fail him scare you. Boo

on dumb old teachers.

Amy and Lucy, 7 poly

On Wed, Apr 22, 2009 at 11:13 PM, <Mathena@...> wrote:

>

>

> His Teacher was going fail him for this last term, until she found out all

> they were doing in tutoring, he has been in Home/Hospital program since

> October, we did the HH because he was missing so much school and they come

> and tutor him at our house 2hrs every week.

> I did actually ask at the end of his Kindergarten year if they would hold

> him back if he ever needed, they told me they usually don't hold back

> children that are on IEP's unless the parents tell them to. Now he is in the

> 3rd grade, never have been held back yet. BUT this year he has missed more

> school than ever, litterly being home sick more than being in school. That I

> am thinking of it. They are doing some testing in may for him, and if he

> hasn't made enough progress I think we will hold him back.

> He has so many issues going on besides the JRA that everything combined is

> just making him miss a lot more school.

> On being more sick since the Enbrel started, we arent going to stop it,

> unless he gets sick during the summer also, being away from school and all

> those germs I am thinking he wont be as sick you know?

>

>

>

> From: Amy Hendrickson

> Sent: Wednesday, April 22, 2009 5:24 PM

>

> < %40>

> Subject: Re: Enbrel

>

> ,

>

> Hang in there! It's hard to have your child miss a lot of school. Lucy has

> missed a lot, but she was a kindergarten repeat for a whole lot of other

> reasons, and now I can see that God in his wisdom, knew what he was doing.

> She missed so much school this year because of jra, and she is still at the

> top of her class.

>

> She's been on Enbrel since February and she hasn't been sick at all. I

> agree with what someone else said, that once they catch something, it is

> hard for the immune system to fight off the next thing. Hopefully he can

> get good and well before he goes back to school.

>

> Amy and Lucy, 7, poly

>

> On Wed, Apr 22, 2009 at 2:54 PM,

<Mathena@...<Mathena%40live.com>>

> wrote:

>

> >

> >

> > Jordon also has Type 1 Diabetes Mellitus, which is why he isn't on some

> > other meds. I am hoping that this summer will be better since he will

> only

> > be in ESY for 15 days. His fever came down today to 99.2 and he stopped

> > vomiting, so his DR said we should still give him his Enbrel shot today.

> > We don't even know yet if the Enbrel is working for him, he hasn't been

> on

> > it consistent enough to tell. Jordon has missed so much school this year

> > that his teacher almost failed him. I want the Enbrel to work so that he

> > won't be in pain anymore and not swollen, and so he can be at school

> > learning and not sick at home

> >

> >

> >

> > From: Becki Larson

> > Sent: Wednesday, April 22, 2009 11:09 AM

> > < %40> < %

> 40>

> > Subject: Re: Enbrel

> >

> > has been on Enbrel and MTX combo for almost 7 yrs now and he rarely

> > ever gets sick.He's only missed school 1 day this year.

> > School is a great place to pick up germs.Sounds like a coincidence to

> > me.Luckily school is almost over so hang in there.

> > Yeah,the meds can lower the immune system,thats what they are supposed to

> > do since our kiddos have over active immune systems.The trick is finding

> the

> > balance.

> > Keep us updated and remember when the immune system is weakened from one

> > illness it's easier for the body to catch another one.The best thing is

> to

> > keep washing those hands.

> > Becki and 10 systemic onset since 01

> >

> > ________________________________

> > From: " Mathena@...

<Mathena%40live.com><Mathena%

> 40live.com> " <

> > Mathena@... <Mathena%40live.com> <Mathena%

> 40live.com>>

> > < %40> < %

> 40>

> > Sent: Wednesday, April 22, 2009 2:19:43 AM

> > Subject: Enbrel

> >

> > For anyone on Enbrel or if your children on it.

> >

> > Jordon had 2 shots of Enbrel then got strep, so we had to put off his 3rd

> > shot, it was 5 days late. We had to wait till he had no fever before

> giving

> > it to him. His 3rd shot was last wed. And now yesterday Jordon went to

> > school fine, and in the middle of the day his nurse called because he is

> > sick again, we brought him home, and again he has Fevers, and is

> vomiting.

> > Now I know the doctor said that the Enbrel would lower his immune system,

> > but I didn't think he would be getting so sick, this often. And he's

> > catching both these incidents of sickness, from school.

> >

> > I was wondering if any of you or your children have gotten so sick while

> on

> > the Enbrel. He is suppose to get his 4th shot of Enbrel today the 22nd,

> but

> > he won't be able to because of the fevers. We will be taking him to see

> his

> > pediatrician in the morning, was just wondering about anyone else's

> > experience with Enbrel.

> >

> >

> >

> >

[Guest guest]

,

I would truly have to question if perhaps Jordon's illnesses are unfortunate

coincidence?  Perhaps he was already in a weakened immune state when he started

the Enbrel and his little body hasn't recovered after that first strep

infection?  My daughter has been on Enbrel for over a year now.  She has 

Primary Immune Deficiency Disease (which  means it is congenital - she was born

with it...she must receive weekly infusions for this and she is especially

vulnerable to illness, which made her rheumy exceptionally hesitant to put her

on a biologic such as Enbrel in the first place).  She has had some more

infections than usual, and had to stop her methotrexate, as the Enbrel and mtx

together caused her to have cellulitis whenever she injected or got her

infusions, etc. and the dr is limited how much she can increase her Arava

(replaced her mtx) due to risk of infection. Of course, she has been home

schooled and this semester is only taking one course

at the college...so she does not have the constant exposure Jordon is having. 

I wonder if Jordon would do better when school is out for summer? 

I have been out of the loop for a while - what was Jordon on before the Enbrel? 

I sure hope he gets feeling better quickly and they can get his treatment

figured out.

(, poly, pidd)

From: Mathena@... <Mathena@...>

Subject: Enbrel

Date: Wednesday, April 22, 2009, 12:19 AM

For anyone on Enbrel or if your children on it.

Jordon had 2 shots of Enbrel then got strep, so we had to put off his 3rd shot,

it was 5 days late. We had to wait till he had no fever before giving it to him.

His 3rd shot was last wed. And now yesterday Jordon went to school fine, and in

the middle of the day his nurse called because he is sick again, we brought him

home, and again he has Fevers, and is vomiting.

Now I know the doctor said that the Enbrel would lower his immune system, but I

didn't think he would be getting so sick, this often. And he's catching both

these incidents of sickness, from school.

I was wondering if any of you or your children have gotten so sick while on the

Enbrel. He is suppose to get his 4th shot of Enbrel today the 22nd, but he

won't be able to because of the fevers. We will be taking him to see his

pediatrician in the morning, was just wondering about anyone else's experience

with Enbrel.

[Guest guest]

Thanks so much for the info, Sue. I'm trying to talk to as many people

as I can about it to get the differing reactions. Some others have said

they've had the itching but it eventually goes away. It seems to be just

the drug I need considering the mtx was beginning to wear off.

Were you newly dxd when you started on it? Guessing not if you were on

mtx [] . How long have you had RA? Any deformities? My left hand

looks fairly good but the right. Not so much. Over the space of 10 years

it's gone from looking great to looking very sad. My wrists have been

the most painful of my entire experience.

How exciting that you can space the doses out. I can't wait until that

is my case. Nae

>

> Nae,

>

> I've been on Enbrel for over 5 years, without mtx or prednisone. I

> can't take mtx because it causes my white blood cell count to be so

> low. I have had no adverse reactions, except an occasional injection

> site reaction. The Enbrel works very well for me, so well that at

> present I am spacing out the injections more.

>

> Sue

>

>

[Guest guest]

Hi Nae,

Yip I have the Enbrel itch and headache. I've been on it since March this year

and it hasn't subsided any neither. I also have a blocked nose with it and

feeling like I have flu, but those disappear 2 days after the injection(I'm on

50mg once a week). Hopefully enbrel will be the drug that gets you back on your

feet, then the itch and headache will be of no significance.

Can't help you about MTX and PRED as I am on other meds, which I continue to

take as Enbrel hasn't kicked in to warrant coming off them.

Like the sound of increased energy and less pain, long may that last.

Love and hugs

________________________________

From: dazot24 <renae1943@...>

Sent: Thursday, 6 August, 2009 22:41:54

Subject: [ ] Enbrel

Is there anyone here who takes Enbrel? I just started it 3 weeks ago

after being on mtx, predisone & folic acid (along with a maraid (sp) of

other meds for many different reasons, sadly [(] ) for at least 20

years. My dream is to get off the Predisone. Well, the mtx also. My

question is, were you able to get off both mtx & Pred.?

So far, I've got increased energy and no pain. But there has been an out

break of itichiness & redness. Plus a headache I cannot get rid of. My

last injection, I took a double dose of Benadryl. Anyone else experience

this? Thanks so much. Nae

[Guest guest]

Nae,

I was not newly diagnosed when I started on Enbrel. The first

medication my rheumy put me on was mtx. That helped my condition, but

not enough. My white blood cell count kept going down, so he added

Arava instead of increasing the mtx. The decline continued, and he

took me off of those two meds and put me on Enbrel. I had to go a

month without any medication while my insurance company was making

them jump through hoops and trying to avoid having to pay for Enbrel.

Finally, they approved it.

I had been diagnosed with RA for about a year and a half when I

started Enbrel. I'm so glad that it continues to work so well for me.

Sue

On Aug 6, 2009, at 10:24 PM, dazot24 wrote:

> Thanks so much for the info, Sue. I'm trying to talk to as many people

> as I can about it to get the differing reactions. Some others have

> said

> they've had the itching but it eventually goes away. It seems to be

> just

> the drug I need considering the mtx was beginning to wear off.

>

> Were you newly dxd when you started on it? Guessing not if you were on

> mtx [] . How long have you had RA? Any deformities? My left hand

> looks fairly good but the right. Not so much. Over the space of 10

> years

> it's gone from looking great to looking very sad. My wrists have been

> the most painful of my entire experience.

>

> How exciting that you can space the doses out. I can't wait until that

> is my case. Nae

[Guest guest]

I forgot to say that I've had RA since early 2001, and I have no

deformities.

Sue

On Aug 7, 2009, at 1:25 PM, marysue wrote:

> Nae,

>

> I was not newly diagnosed when I started on Enbrel. The first

> medication my rheumy put me on was mtx. That helped my condition, but

> not enough. My white blood cell count kept going down, so he added

> Arava instead of increasing the mtx. The decline continued, and he

> took me off of those two meds and put me on Enbrel. I had to go a

> month without any medication while my insurance company was making

> them jump through hoops and trying to avoid having to pay for Enbrel.

> Finally, they approved it.

>

> I had been diagnosed with RA for about a year and a half when I

> started Enbrel. I'm so glad that it continues to work so well for me.

>

> Sue

[Guest guest]

>

> Thanks for your input. I hate to hear you have the itch & headache

> too :-( My rheumy doesn't believe the headache is from the Enbrel. At least

> that's the feeling I got from her nurse. She said to take extra strength

> Tylenol. So I've tried it & it's helped some. The itching has gone away &

> hasn't returned since my last dose. Since you are in the UK, how long did it

> take you to get approved for a biologic? I'm also on the 50 mg once a week.

> I don't seem to have the flu symptoms like you. just the stinking headache.

> What other meds aare you on besides mtx & pred.? Sorry for all the

> questions. I'm just so interested in everyone's experiences. Nae

>

> Hi Nae,

> Yip I have the Enbrel itch and headache. I've been on it since March this

> year and it hasn't subsided any neither. I also have a blocked nose with it

> and feeling like I have flu, but those disappear 2 days after the

> injection(I'm on 50mg once a week). Hopefully enbrel will be the drug that

> gets you back on your feet, then the itch and headache will be of no

> significance.

>

> Can't help you about MTX and PRED as I am on other meds, which I continue

> to take as Enbrel hasn't kicked in to warrant coming off them.

>

> Like the sound of increased energy and less pain, long may that last.

>

> Love and hugs

>

>

>

>

>

>

[Guest guest]

No, I HAD to get off of mtx and Arava because my WBC count was down to

2.2. You don't HAVE to take mtx with Enbrel or Humira, so those were

the two choices he gave me. He said that you do have to take mtx with

Remicade, so that was not an option for me.

But I had no other adverse side effects from the mtx like the ones I

see mentioned here, like nausea, mouth sores, hair loss, fatigue, high

liver enzymes, etc. It's strange how we all react so differently to

meds.

But, yes, it was a blessing in disquise that I could get on to the

good stuff, Enbrel, LOL.

Sue

On Aug 7, 2009, at 9:16 PM, dazot24 wrote:

> Sue, so when you went to Enbrel, he didn't leave you on mtx for a

> while?

> I've been on mtx & pred. for over 20 years and am ready to get off

> both.

> Maybe it was a blessing in disquise that those other meds didn't work.

> B/c it seems the Enbrel has been a Godsend. What a shame to have to

> jump

> through so many hoops just to get the meds you need to survive such a

> dreaded disease. Makes me angry. I've heard of so many other horro

> stories like that.

[Guest guest]

________________________________

From: <Rheumatoid.Arthritis.Support@...>

Sent: Friday, 7 August, 2009 22:18:11

Subject: Re: [ ] Enbrel

Nae and ,

Just an idea: maybe you could ask to switch to the Enbrel you mix

yourself. The ingredients are a little bit different than what you are

using now.

Not an MD

On Fri, Aug 7, 2009 at 2:12 PM, Renae<renae1943gmail (DOT) com> wrote:

>>

>> Thanks for your input. I hate to hear you have the itch & headache

>> too :-( My rheumy doesn't believe the headache is from the Enbrel. At least

>> that's the feeling I got from her nurse. She said to take extra strength

>> Tylenol. So I've tried it & it's helped some. The itching has gone away &

>> hasn't returned since my last dose. Since you are in the UK, how long did it

>> take you to get approved for a biologic? I'm also on the 50 mg once a week.

>> I don't seem to have the flu symptoms like you. just the stinking headache.

>> What other meds aare you on besides mtx & pred.? Sorry for all the

>> questions. I'm just so interested in everyone's experiences. Nae

[Guest guest]

A simple solution when I experienced that problem after 3 years on Enbrel was to

get my prescription bumped up from twice a week injections to every 3 days. It's

worked well for several years. Use a computer calendar to help you keep track

because injections will change every week but it was well worth it to keep

Enbrel working for me.

Janette <janettemorgan@...>

[Guest guest]

When Enbrel started wearing off my rheumy switched me to Humira, and I've no

complaints.

RA , North Jersey

[Guest guest]

Depending on how good your insurance coverage is, I'd suggest Remicade first

(expensive) or Humira (less expensive.) But that's just me. I've never taken

Enbrel. My doctor has never suggested Enbrel for me and though my Humira is now

wearing off after three years, he'd rather I try Simponi next.

" Jim " <Jrdoubleyou@...>