Enbrel Question

[Guest guest]

-Hi Jill,

Enbrel is very quick acting but has a very short life. When Nick

started on it, I think we noticed a difference within the 1st week or

two. We started on 2 shots a week( splitting the dose) and then went to

1 shot a week once he was doing well. When we started to see a decline

in it's effectiveness we tried going back to the 2 shots a week to see

if getting it more often would help ( It didn't)

I think it's totally fessable to notice even one missed enbrel shot.

Whereas with something slow acting like MTX, it would take a little

longer to see a negative effect.

Hope this helps

hugs Helen and (9,systemic)

-- In , " jahutslar " <shutslar@...> wrote:

>

> Kendra is on enbrel. I was wondering when you have to be off of it

due

> to illness, how long the last dose stays in your system. a month ago

> she had to miss a week and a half due to a sinus infection. the past

> week she had a fever so she missed a dose again. she seems to have

> alot more pain/stiffness when she misses. i realize that just being

> sick does that to her, but i was wondering how fast missing the

enbrel

> affects her?

> thanks

> Jill & kendra 11 jra

>

[Guest guest]

Hi,

The half life of Enbrel is 3-4 days which is why the 1 week dosing is as

effective as 2x weekly for most but not all.

Several yrs ago before they opened the RI plant there was a huge shortage of

Enbrel People already on it were having to miss doses and for the most part

it would take 3-4 weeks without to have symptoms return.

We see Dr.Lovell at Cincinnati Children's, he's the Dr that did all the

original trials and long term studies for Enbrel.Over the yrs his instructions

have

changed but basicly resume Enbrel when the fever has resolved.We have also

been told you can restart 48hrs after starting an antibiotic.

Hope this helps some.

Becki and 8 systemic

[Guest guest]

Hi there - Lexi has also had to miss a few shots of Enbrel here and there

recently because of her constant battles w/ strep, and we defintiely saw an

increase in her pain by 5 days after the due date of her shot!!! It seems as

though it only stays in your system for a bit.

Arvada, CO. mom to Lexi, 5 (either pauci or poly JRA)

Re: enbrel question

-Hi Jill,

Enbrel is very quick acting but has a very short life. When Nick

started on it, I think we noticed a difference within the 1st week or

two. We started on 2 shots a week( splitting the dose) and then went to

1 shot a week once he was doing well. When we started to see a decline

in it's effectiveness we tried going back to the 2 shots a week to see

if getting it more often would help ( It didn't)

I think it's totally fessable to notice even one missed enbrel shot.

Whereas with something slow acting like MTX, it would take a little

longer to see a negative effect.

Hope this helps

hugs Helen and (9,systemic)

-- In , " jahutslar " <shutslar@...> wrote:

>

> Kendra is on enbrel. I was wondering when you have to be off of it

due

> to illness, how long the last dose stays in your system. a month ago

> she had to miss a week and a half due to a sinus infection. the past

> week she had a fever so she missed a dose again. she seems to have

> alot more pain/stiffness when she misses. i realize that just being

> sick does that to her, but i was wondering how fast missing the

enbrel

> affects her?

> thanks

> Jill & kendra 11 jra

>

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[Guest guest]

Kendra seems to notice the pain also within a few days of missing. I just

didn't know if this was normal or if she should still be " without " pain for

longer.

Thanks for everyone's help!!

Jill & Kendra 11 jra

_____

From: [mailto: ] On Behalf

Of redfeather03@...

Sent: Sunday, November 19, 2006 10:21 AM

Subject: Re: Re: enbrel question

Hi there - Lexi has also had to miss a few shots of Enbrel here and there

recently because of her constant battles w/ strep, and we defintiely saw an

increase in her pain by 5 days after the due date of her shot!!! It seems as

though it only stays in your system for a bit.

Arvada, CO. mom to Lexi, 5 (either pauci or poly JRA)

Re: enbrel question

-Hi Jill,

Enbrel is very quick acting but has a very short life. When Nick

started on it, I think we noticed a difference within the 1st week or

two. We started on 2 shots a week( splitting the dose) and then went to

1 shot a week once he was doing well. When we started to see a decline

in it's effectiveness we tried going back to the 2 shots a week to see

if getting it more often would help ( It didn't)

I think it's totally fessable to notice even one missed enbrel shot.

Whereas with something slow acting like MTX, it would take a little

longer to see a negative effect.

Hope this helps

hugs Helen and (9,systemic)

-- In @group <mailto: %40> s.com,

" jahutslar " <shutslar@...> wrote:

>

> Kendra is on enbrel. I was wondering when you have to be off of it

due

> to illness, how long the last dose stays in your system. a month ago

> she had to miss a week and a half due to a sinus infection. the past

> week she had a fever so she missed a dose again. she seems to have

> alot more pain/stiffness when she misses. i realize that just being

> sick does that to her, but i was wondering how fast missing the

enbrel

> affects her?

> thanks

> Jill & kendra 11 jra

>

__________________________________________________________

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]

I was just wondering. She doesn't swell, but still hurts. Some days more

than others. I can't get her to take tynole or a hot bath.

She doesn't want anymore medicine. She's 11 and STUBBORN!! I was just

wondering!!

Thanks!

Jill & Kendra 11 jra

_____

From: [mailto: ] On Behalf

Of bound for london

Sent: Monday, November 27, 2006 10:25 AM

Subject: Re: Enbrel question

Yes, unfortunately the Enbrel does not take away the pain, at least for my

daughter. Bummer, I know!-e

jahutslar <shutslarfullnet (DOT) <mailto:shutslar%40fullnet.com> com> wrote: Hi

everyone!

I had a question about enbrel. Kendra has been on it for about 3 months

now. She's had to miss about 4 injections due to fever. Here's the

question. Should the enbrel make her completely pain free or just make

the pain " better " ? it has kept the swelling down, but she still has a

lot of pain 3 out of the 7 days. and could missing the injections make

her that sore too? she didn't miss them all at once. it was about 3

weeks apart she missed them.

thanks!

Jill & kendra 11 jra

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

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[Guest guest]

Does your daughter still take the Enbrel? I don't know when to ask for

different meds that may work better or just trust in the rheumy to do the

best thing for Kendra. I really like our rheumy and know she'd do what's

best, but I just hate to see her hurting so often if there's something out

there that can make it better.

Jill & Kendra 11 jra

_____

From: [mailto: ] On Behalf

Of bound for london

Sent: Monday, November 27, 2006 10:25 AM

Subject: Re: Enbrel question

Yes, unfortunately the Enbrel does not take away the pain, at least for my

daughter. Bummer, I know!-e

jahutslar <shutslarfullnet (DOT) <mailto:shutslar%40fullnet.com> com> wrote: Hi

everyone!

I had a question about enbrel. Kendra has been on it for about 3 months

now. She's had to miss about 4 injections due to fever. Here's the

question. Should the enbrel make her completely pain free or just make

the pain " better " ? it has kept the swelling down, but she still has a

lot of pain 3 out of the 7 days. and could missing the injections make

her that sore too? she didn't miss them all at once. it was about 3

weeks apart she missed them.

thanks!

Jill & kendra 11 jra

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

Access over 1 million songs - Music Unlimited.

[Guest guest]

Jill,

Some children react to missing a dose of Enbrel while others can miss several

in a row.

I believe the ultimate goal is pain free all of the time.It's a matter of

finding the right combo of meds at the right doses.

I have seen Enbrel work an absolute miricle with my son but it's not that way

for everyoneIt takes time,alot of patiance and good communication with the

ped rheumy of what you want.You want pain free all of the time.Now it's just a

matter of how far you are willing to go to achieve it.

Do you do 1 or 2 shots a week?Some kids can't do just 1 shot they need their

weekly dose divided.

I hope things get better for you.

Hugs

Becki and 8 systemic

[Guest guest]

Hi,

takes 1.3ml 1x a week.

He started out 4yrs ago at 4 yrs old and on .5mg 2x a week.I just now got

them to up it 3 months ago.

The you will read about is not the now.Four yrs have gone by and

lots of meds were tapered and discontinued .He is still realy good for the

most part but still having some trouble.The docs are taking baby steps with his

med increases and it's been 2 yrs since things started to go down hill.

Google my name(Becki Larson) and it should be the first one.It takes you to

the story Cincinnati Childrens PR did on .It's a section called Change the

Outcome.It will answer your question on how long and then some.

How far away from Louisville are you?

Just curious because I know Donna too.We have had dinner together a few times

on our long journey to Cinci.

Going back to Enbrel... is 8 and 85lbs and by going from 1ml to 1.3ml 3

months ago only put him at the starting dose of .8mg per kilo or .4mg 2x a

week.

What does Kendra weigh?My daughter will be 11 next month and she is a little

over 100 but she is also a bit overweight.

Does Kendra take MTX and if so oral or sub q and what dose? was on 25mg

sub q at 3.

I found this list a few months after diagnosis and it saved my life.I can

honestly say life altering things have happened from the knowledge gained from

personal posts and all the great medical stuff Georgina finds.

I hope the next couple of weeks go well and you don't have anymore set backs.

Hugs

Becki and 8 systemic

[Guest guest]

Kendra is on two shots a week. It's .6 cc each injection. I talked to the

peds rheumy nurse today and she told me to give Kendra a week or two on it

and if not better to let her know and they'll try to up the dose or see what

else can be done before our next visit. Which isn't until the second week of

January. How long was on it before you saw a difference? I am

wondering if it's the missing a few doses. She seemed to be doing fine with

it until then. We have an outbreak of chicken pox at her school-in her

room-and she was taken off for a week. Then she also had a sinus infection

and taken off one other week.

Thanks for you help! I am sooooo glad Donna told me about this site. I felt

all alone with all this until I stopped just reading the posts and started

to post on this site!!

Thanks again!!

Jill & Kendra 11 jra

_____

From: [mailto: ] On Behalf

Of Arthurnator@...

Sent: Tuesday, November 28, 2006 5:59 PM

Subject: Re: Enbrel question

Jill,

Some children react to missing a dose of Enbrel while others can miss

several

in a row.

I believe the ultimate goal is pain free all of the time.It's a matter of

finding the right combo of meds at the right doses.

I have seen Enbrel work an absolute miricle with my son but it's not that

way

for everyoneIt takes time,alot of patiance and good communication with the

ped rheumy of what you want.You want pain free all of the time.Now it's just

a

matter of how far you are willing to go to achieve it.

Do you do 1 or 2 shots a week?Some kids can't do just 1 shot they need their

weekly dose divided.

I hope things get better for you.

Hugs

Becki and 8 systemic

[Guest guest]

Hi Jill,

No my daughter no longer takes Enbrel. She started it in 2001 I think and we

were told it should make a big difference right away. Several months went by and

she was still with huge joints, pain and still on about 40 of Prednisone daily.

Finally we injected all her active joints and it settled some of them down but

not all. Her knees were her original joint/s and they just would not quit no

matter what. She has just added and added meds but still always hurts. In

September her rheumy decided enough (she has only been going to this one since

last December). After trying to add Plaquenil and a couple other trials she

decided to switch to Remicade. Then her cousin was killed in a car accident so

we begged and pleaded for a quick initial dose and it made her so sick. It was

such a hard time anyways going to her cousins funeral and driving fore 18 hours

to get there. So, we can't say if it was just the new meds. She had her second

dose and it worked a couple weeks and then it

was not good anymore. (She never got to pain free). She had her third dose and

tolerated it okay. When I ask her how she is doing she will generall say okay

because no she doesn't more meds either. But....she came home for Thanksgiving

(she is in college several hours north) she said she was tired but otherwise

okay. Well, the truth came out on Friday. We decided to go to the mall in the

afternoon. We went for lunch and then to a store. Then I said I wanted to go

another store and she said okay for a few minutes, but then she asked to go home

because she was in so much pain. We bought her a wheelchair this summer and I

should know to bring it when we go to the mall or the county fair or whatever.

She is miserable when we try these kind of things. She hurts pretty much all day

everyday and we haven't come up with anything too good. She takes Tylenol and

Ultram in between for pain. She also has some cream that the pharmacy compounded

for us. The only time she feels really

good pain wise is on high doses of pred but who wants to do that! Her rheumy

said we could try something else but what? humira won't work they say. Kineret

is a daily inject. She would never go for that.

I guess I am not full of advice, just I hear you and feel your pain. I wish I

had more to offer. If your dad is large enough you could possibly increase the

Enbrel. Worth calling the rheumy about. Or to see if you have maxed out the mtx

too. Let me know what you hear. I always hopeful someone has come up with a good

plan.

e, mom to joe 19 poly + lupus

Jill Hutslar <shutslar@...> wrote:

Does your daughter still take the Enbrel? I don't know when to ask for

different meds that may work better or just trust in the rheumy to do the

best thing for Kendra. I really like our rheumy and know she'd do what's

best, but I just hate to see her hurting so often if there's something out

there that can make it better.

Jill & Kendra 11 jra

_____

From: [mailto: ] On Behalf

Of bound for london

Sent: Monday, November 27, 2006 10:25 AM

Subject: Re: Enbrel question

Yes, unfortunately the Enbrel does not take away the pain, at least for my

daughter. Bummer, I know!-e

jahutslar <shutslarfullnet (DOT) <mailto:shutslar%40fullnet.com> com> wrote: Hi

everyone!

I had a question about enbrel. Kendra has been on it for about 3 months

now. She's had to miss about 4 injections due to fever. Here's the

question. Should the enbrel make her completely pain free or just make

the pain " better " ? it has kept the swelling down, but she still has a

lot of pain 3 out of the 7 days. and could missing the injections make

her that sore too? she didn't miss them all at once. it was about 3

weeks apart she missed them.

thanks!

Jill & kendra 11 jra

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

Access over 1 million songs - Music Unlimited.

[Guest guest]

Hello,

I am wondering if anyone else has had the same experience...

I am on 7.5 mg of MTX (IM injection) and Enbrel 50mg. I started the

Enbrel 6 weeks ago. The first 2-3 weeks I noticed I would have a good 2-

3 days of feeling pretty darn good. That would diminish as I got

closer to my next weekly dose but was definitely an improvement I was

enjoying!

Now over the last 3 weeks it seems I'm going backwards and my pain and

stiffness is getting worse again. Is this a sign that Enbrel isn't

going to work for me? MTX alone wasn't working either..anyone have this

happen and what did you do? My husband thinks it may be that I'm doing

more than I should (Walking and/or going to the gym 5 days a week)and

that it's basically counteracting any benefit I was feeling before.

Shouldn't I be trying to exercise as much as I can when I feel up to it?

I'd love to hear your thoughts and ideas.

Ang~

[Guest guest]

Ang: only your doctor can figure out what's going on with your meds and make

proper suggestions because we all react so differently. However, it's my

understanding that the best thing you can do for any kind of arthritis (osteo,

PsA, RA, whatever) is to keep moving so those muscles and joints don't stiffen

up. You don't want to over-do and pretend you're training for a marathon; but

any kind of well rounded gym workout should be good for you. Just make sure you

start-up easy and stretch after. That is so important!!!!!

Joanna Hoelscher

[Guest guest]

Hi Ann, I don't take Enbrel,but my son takes Remecade, and he has no problems

with the site. You can't even tell he has been enjected.Maybe you have an

allergy to it? Talk to your Dr or the person who infuses it for you. What I want

to ask is, how does the drug do for you? Do you feel any better? I have Reiter's

and Psoratic Arthritis, and possibly Ankylosing Spondylitis. All started from

Ulcerative Colitis. I am in so much pain all the time, and need some kind of

'miracle drug' to help with this. I am a risk patient, because my kidney and

bladder is bad. But I need something to help with this pain. Let me know, thank

you. in Oregon

- In , " Ann S. " <stapl2002@...> wrote:

>

> Hi,

>

> I am new and have posted once or twice. I have undiff.

> spondyloarthropathy.

>

> I have a question about the local reaction to Enbrel.

> I started the drug two weeks ago. My injection sites

> looked great at first, nothing there at all. However,

> each site develops an impressive bruise at about one

> week and at 1.5-2 weeks, each has a red blanching

> rash around the bruise.

>

> I don't think it is a technique issue, as I am trained

> to give injections (to others) for my job. I have not

> had sun exposure in the area.

>

> Has anyone else seen this? Should I contact the

> doctor? The patient insert mentioned a high frequency

> of injection site reactions.

>

> Thanks

>

> Ann

>

> ____________________

> Ann

>

>

>

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