Re: Anyone have an Enbrel horror story?

[Guest guest]

--- In , " j_maxine24 " <jada_letrud@...>

wrote:

>

> My dx was August 2005. I have been on MTX, Sulfasalazine, and

> Enbrel. Things were going well until I started Enbrel. By the

time I

> got to the 5th shot I had a horrible rash. I stopped Enbrel and

then

> ended up in the hospital for a month. Basically my liver and

kidneys

> failed. It was a disaster but I'm alive. The doctors think it was

the

> Enbrel that caused everything to go haywire.

>

> I had so much hope for Enbrel ... everyone says it is such a

wonder

> drug. Is there anyone else out there with an Enbrel horror

story? or

> someone that's had major troubles finding the right med?

>

> Give me some hope so I don't feel so doomed!

Now I am scared, I have been on Enbrel 5 weeks now and I to am on

Mtx Sufasalazine and Nabumetone. So far I have been good. Hope you

are doing good and find something that works for you.

Take care

Janet IN IL>

[Guest guest]

Wow, your story scares me to death. My name is Missy and my daughter, is

six years old now. She was dx when she was two. We've tried Methotrexate inj.

and Remicade IV for four years now. In the past we've tried Sulfasalazine and a

few other things I'd have to look up. She was also on Prednisone for over a

year and a half from 2 to three and a half years old. Now since November when

she got pneumonia, she's been on Prednisone again. Last time, when she was only

two and weighing 29 lbs she gained 25 lbs in two months because she was on 67.5

mg of Prednisone a day. Her bps were 197/104 and she was on two bp meds. I had

to take her bp every 8 hours for a year. It was no picnic. Anyway, she's sick

again since November and has fevers and horrible joint pain. The docs say she's

built up anti-bodies to the Remicade and want to switch her to Enbrel. That or

Kineret IL1 blocker instead of tnf blocker. I said we'd try Enbrel first

because that's only a shot twice a

week. I don't want to try either, but I don't want them to increase her

prednisone. She's gained 16 pounds this time so far and she's SOOOOOOOO cranky.

She's not my sweet easygoing baby. I guess I'd be crabby to if I was in pain

all the time wouldn't I? I hate seeing her like this, but I also hate making

these decisions about meds when they all sound crappy to me.

I'm sorry I'm babbling, but I am curious about other people's reactions to the

Enbrel. I think I have to start the inj this coming week.

Thanks for any help or advice. Also, could you tell me if it stings going

in??

Missy

j_maxine24 <jada_letrud@...> wrote:

My dx was August 2005. I have been on MTX, Sulfasalazine, and

Enbrel. Things were going well until I started Enbrel. By the time I

got to the 5th shot I had a horrible rash. I stopped Enbrel and then

ended up in the hospital for a month. Basically my liver and kidneys

failed. It was a disaster but I'm alive. The doctors think it was the

Enbrel that caused everything to go haywire.

I had so much hope for Enbrel ... everyone says it is such a wonder

drug. Is there anyone else out there with an Enbrel horror story? or

someone that's had major troubles finding the right med?

Give me some hope so I don't feel so doomed!

[Guest guest]

> My dx was August 2005. I have been on MTX, Sulfasalazine, and

> Enbrel. Things were going well until I started Enbrel. By the

time I

> got to the 5th shot I had a horrible rash. I stopped Enbrel and

then

> ended up in the hospital for a month. Basically my liver and

kidneys

> failed. It was a disaster but I'm alive. The doctors think it was

the

> Enbrel that caused everything to go haywire.

>

> I had so much hope for Enbrel ... everyone says it is such a

wonder

> drug. Is there anyone else out there with an Enbrel horror

story? or

> someone that's had major troubles finding the right med?

>

> Give me some hope so I don't feel so doomed!

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Dear Missy, I feel so badly for your daughter. I have been on Enbrel for 1 year

now and I love it. The injection itself doesn't hurt me, but a small child, it

could be scary. I always use my stomach, because it hurts me in the leg or arm

and I always bruise there. The stomach is fine if you put it in slowly and then

slowly inject the medication. It usually itches like crazy for a few days, and

I get fatugued for a few days before and after my injections. Hope this helps,

let me know if you need other info. LeBlanc alicia7375@... or

alicia7375@...

MELISSA CRIGLER <nmsanders@...> wrote: Wow, your story scares me to

death. My name is Missy and my daughter, is six years old now. She was

dx when she was two. We've tried Methotrexate inj. and Remicade IV for four

years now. In the past we've tried Sulfasalazine and a few other things I'd

have to look up. She was also on Prednisone for over a year and a half from 2

to three and a half years old. Now since November when she got pneumonia, she's

been on Prednisone again. Last time, when she was only two and weighing 29 lbs

she gained 25 lbs in two months because she was on 67.5 mg of Prednisone a day.

Her bps were 197/104 and she was on two bp meds. I had to take her bp every 8

hours for a year. It was no picnic. Anyway, she's sick again since November

and has fevers and horrible joint pain. The docs say she's built up anti-bodies

to the Remicade and want to switch her to Enbrel. That or Kineret IL1 blocker

instead of tnf blocker. I said we'd

try Enbrel first because that's only a shot twice a

week. I don't want to try either, but I don't want them to increase her

prednisone. She's gained 16 pounds this time so far and she's SOOOOOOOO cranky.

She's not my sweet easygoing baby. I guess I'd be crabby to if I was in pain

all the time wouldn't I? I hate seeing her like this, but I also hate making

these decisions about meds when they all sound crappy to me.

I'm sorry I'm babbling, but I am curious about other people's reactions to the

Enbrel. I think I have to start the inj this coming week.

Thanks for any help or advice. Also, could you tell me if it stings going

in??

Missy

j_maxine24 <jada_letrud@...> wrote:

My dx was August 2005. I have been on MTX, Sulfasalazine, and

Enbrel. Things were going well until I started Enbrel. By the time I

got to the 5th shot I had a horrible rash. I stopped Enbrel and then

ended up in the hospital for a month. Basically my liver and kidneys

failed. It was a disaster but I'm alive. The doctors think it was the

Enbrel that caused everything to go haywire.

I had so much hope for Enbrel ... everyone says it is such a wonder

drug. Is there anyone else out there with an Enbrel horror story? or

someone that's had major troubles finding the right med?

Give me some hope so I don't feel so doomed!

[Guest guest]

,

Thanks and thanks to all who responded as well. Can I ask does anyone here

have to mix their own Enbrel? Em will not be getting the prefilled syringes. I

already give her methotrexate shots but I use LMX 5% cream 45 min before I do

it. Also, I've discovered this new 3x3 inch disk that has a hold in the middle.

You push it onto the skin for 20 seconds. It has pokey things all over it and

" distracts " the nerves from feeling the shot. The disc doesn't hurt, it just

feels irritating for a minute. It even numbs it for a few seconds after the

shot. It's called shot blocker. She still feels a " sting " for a minute though.

I give her shots in the thigh and arm. Well, gotta go for now.

Missy

LeBlanc <alicia7375@...> wrote:

Dear Missy, I feel so badly for your daughter. I have been on Enbrel for 1

year now and I love it. The injection itself doesn't hurt me, but a small

child, it could be scary. I always use my stomach, because it hurts me in the

leg or arm and I always bruise there. The stomach is fine if you put it in

slowly and then slowly inject the medication. It usually itches like crazy for

a few days, and I get fatugued for a few days before and after my injections.

Hope this helps, let me know if you need other info. LeBlanc

alicia7375@... or alicia7375@...

MELISSA CRIGLER <nmsanders@...> wrote: Wow, your story scares me to

death. My name is Missy and my daughter, is six years old now. She was

dx when she was two. We've tried Methotrexate inj. and Remicade IV for four

years now. In the past we've tried Sulfasalazine and a few other things I'd

have to look up. She was also on Prednisone for over a year and a half from 2

to three and a half years old. Now since November when she got pneumonia, she's

been on Prednisone again. Last time, when she was only two and weighing 29 lbs

she gained 25 lbs in two months because she was on 67.5 mg of Prednisone a day.

Her bps were 197/104 and she was on two bp meds. I had to take her bp every 8

hours for a year. It was no picnic. Anyway, she's sick again since November

and has fevers and horrible joint pain. The docs say she's built up anti-bodies

to the Remicade and want to switch her to Enbrel. That or Kineret IL1 blocker

instead of tnf blocker. I said we'd

try Enbrel first because that's only a shot twice a

week. I don't want to try either, but I don't want them to increase her

prednisone. She's gained 16 pounds this time so far and she's SOOOOOOOO cranky.

She's not my sweet easygoing baby. I guess I'd be crabby to if I was in pain

all the time wouldn't I? I hate seeing her like this, but I also hate making

these decisions about meds when they all sound crappy to me.

I'm sorry I'm babbling, but I am curious about other people's reactions to the

Enbrel. I think I have to start the inj this coming week.

Thanks for any help or advice. Also, could you tell me if it stings going

in??

Missy

j_maxine24 <jada_letrud@...> wrote:

My dx was August 2005. I have been on MTX, Sulfasalazine, and

Enbrel. Things were going well until I started Enbrel. By the time I

got to the 5th shot I had a horrible rash. I stopped Enbrel and then

ended up in the hospital for a month. Basically my liver and kidneys

failed. It was a disaster but I'm alive. The doctors think it was the

Enbrel that caused everything to go haywire.

I had so much hope for Enbrel ... everyone says it is such a wonder

drug. Is there anyone else out there with an Enbrel horror story? or

someone that's had major troubles finding the right med?

Give me some hope so I don't feel so doomed!

[Guest guest]

I used the Enbrel that you mix. I never used the pre-mix. It actually came

on the market around the same time I stopped using Enbrel. I prefer the

one you mix as it did not burn when injecting. If I had a choice I would use

the enbrel you mix and take twice a week.

I think the disk is a good idea. I am very familier with the cream. I use

to work in pediatrics.

Toni

In a message dated 5/22/2006 8:00:05 P.M. Central Daylight Time,

writes:

From: " MELISSA CRIGLER " nmsanders@...

Date: Mon May 22, 2006 4:57pm(PDT)

Subject: Re: Anyone have an Enbrel horror story?

,

Thanks and thanks to all who responded as well. Can I ask does anyone here

have to mix their own Enbrel? Em will not be getting the prefilled syringes.

I already give her methotrexate shots but I use LMX 5% cream 45 min before

I do it. Also, I've discovered this new 3x3 inch disk that has a hold in the

middle. You push it onto the skin for 20 seconds. It has pokey things all

over it and " distracts " the nerves from feeling the shot. The disc doesn't

hurt, it just feels irritating for a minute. It even numbs it for a few

seconds after the shot. It's called shot blocker. She still feels a " sting "

for

a minute though. I give her shots in the thigh and arm. Well, gotta go for

now.

Missy