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Enbrel again

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My son 6year old systemic started embrel about 3 mounths ago we started to

notice the effects after about 2-3 weeks now his swelling is almost gone

and he has said he thinks his arthritis is getting better.

Hang in there , talk to all the people in this group, they are very

helpful and supporitive.

Have you joined the arthritis foundation yet, If you can get to one of

there conferences go. they are very good and you will get lots of info.

and she will be able to visit with other people with same problems.

Good Luck,

--- boundforlondon <kmckell@...> wrote:

> Hi all,

>

> We received the coveted Enbrel last week. Our daughter has received 2

> doses so far with no response. how long does it take to work? I am so

> discouraged for her. She is a beautiful teenage girl who now looks

> horrible (on the outside)Her face is huge, her tummy huge, terrible

> acne, etc. She is now taking Tums, Methotrexate, Prednisone, Zantac,

> Folic Acid and the occasional Ibuprofen. She says the Ibuprofen does

> nothing for her. She just hurts. Her nose runs continuosly, never

> stops. This is a child who is never sick ever and now we can't get

> her to feel better.

>

> I am so frustrated for her. She deserves to enjoy life not go through

> all of this. Sorry to vent but I am so frustrated. Nothing seems to

> be working. I realize we are still new at this, only 8 months into

> it, but I just want to make my daughter feel better. We go up to

> clinic all the time and they say " I promise this will work " and she

> gets sicker and sicker, more joints, more side effects, more pain,

> more swelling etc

>

> So if you have positive info about Enbrel I am ready and willing to

> hear it. Thanks,

>

> e, with 14 y.o. with severe poly,not responding to anything

> they try!

>

>

__________________________________________________

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Hi, e. I'm sorry your daughter is having such a hard time. Its hard

enough just being 14 then with all this on top. Has your daughter tried

anything different than ibuprofen? My son cannot take it because of the pain

he gets in his stomach. He takes Celebrex (600 to 800 mgs daily), along with

his other med and that has helped him with pain and inflammation. Much

better than ibuprofen without having any stomach complications. Perhaps if

she tried a different NSAID like Celebrex or Vioxx it might help her more.

Just an idea, Michele (mom of 14, pauci jra)

enbrel again

Hi all,

We received the coveted Enbrel last week. Our daughter has received 2

doses so far with no response. how long does it take to work? I am so

discouraged for her. She is a beautiful teenage girl who now looks

horrible (on the outside)Her face is huge, her tummy huge, terrible

acne, etc. She is now taking Tums, Methotrexate, Prednisone, Zantac,

Folic Acid and the occasional Ibuprofen. She says the Ibuprofen does

nothing for her. She just hurts. Her nose runs continuosly, never

stops. This is a child who is never sick ever and now we can't get

her to feel better.

I am so frustrated for her. She deserves to enjoy life not go through

all of this. Sorry to vent but I am so frustrated. Nothing seems to

be working. I realize we are still new at this, only 8 months into

it, but I just want to make my daughter feel better. We go up to

clinic all the time and they say " I promise this will work " and she

gets sicker and sicker, more joints, more side effects, more pain,

more swelling etc

So if you have positive info about Enbrel I am ready and willing to

hear it. Thanks,

e, with 14 y.o. with severe poly,not responding to anything

they try!

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Hi ,

I was so happy to read that Lori finished the marathon. That must have been an exhilarating experience. It must have been nice, also, to meet with Tina Wesson. I was excited when I first heard that the Survivor champ had arthritis and had hoped that she would become a spokesperson to help spread more arthritis awareness : ) That would have been to good to be true, that you might have had the chance to come out to Maui. I'm sure the group was very busy and I hope that your visit to Oahu was a great one. Maybe, next time, you'll pick Maui : )

, I'm so happy that Enbrel seems to be working. It's so nice to hear those words from your child ~ that they think their arthritis is finally starting to get better. I hope the improvements continue.

Take Care,

Georgina

My son 6year old systemic started embrel about 3 mounths ago we started tonotice the effects after about 2-3 weeks now his swelling is almost goneand he has said he thinks his arthritis is getting better.Hang in there , talk to all the people in this group, they are veryhelpful and supporitive.Have you joined the arthritis foundation yet, If you can get to one ofthere conferences go. they are very good and you will get lots of info.and she will be able to visit with other people with same problems.Good Luck,

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Dear e and daughter, Noone should make promises to you that they can't keep. I know your mind set at this point and it is one of grasping at straws so to speak. I have some experience with Embrel, as it gave me the one and only remission I've ever had. That being said I also must tell you that it lasted only 6 weeks. I tell you this not to burst your bubble but the help you to accept that there are no guarantees with JRA. So you have got to learn to get past the bad and find the good that comes of it , it's their if you look hard enough. Teens are hard no matter what the circumstances this I know, I did what I could with my friends, some were understanding , some were not. As moms we always want to fix things for our children, it's just second nature, and only natural. her pain will teach her compassion, her challenges will teach her to be creative, her neigh sayers will teach her to be strong, those that judge her on appearance, teach her that true beauty comes from within, others impatience will teach her perseverance, this list goes on and on I hope your Embrel will kick in soon, I could tell subtle changes after 2 weeks and went into remission after 8 weeks. I've dealt with JRA for well over 30 years and I know how it affects every aspect of your child's life. And every aspect of your life and even the other family members and friends that are close. Learn to take one day at a time, destress whenever possible and celebrate her strengths whenever possible. This may sound really bizarre to you but I Co-Lead a support group for kids and young adults with arthritis and during one of Our FACES meetings... we were discussing some of our challenges and truely it was stuff that most everyone should cry about when hearing it, But we all sat around that room laughing our selves into knots about our predicaments and how we solved them. Change what you can, give the things you can't deal with to God, And laugh your buns off at the rest !!! :):):):):)Tree:):):):):):):):) F.A.C.E.S. Co-Leader Facing Arthritis with Compassion, Encouragement and Support Louisville Kentucky enbrel again Hi all,We received the coveted Enbrel last week. Our daughter has received 2doses so far with no response. how long does it take to work? I am sodiscouraged for her. She is a beautiful teenage girl who now lookshorrible (on the outside)Her face is huge, her tummy huge, terribleacne, etc. She is now taking Tums, Methotrexate, Prednisone, Zantac,Folic Acid and the occasional Ibuprofen. She says the Ibuprofen doesnothing for her. She just hurts. Her nose runs continuosly, neverstops. This is a child who is never sick ever and now we can't gether to feel better.I am so frustrated for her. She deserves to enjoy life not go throughall of this. Sorry to vent but I am so frustrated. Nothing seems tobe working. I realize we are still new at this, only 8 months intoit, but I just want to make my daughter feel better. We go up toclinic all the time and they say "I promise this will work" and shegets sicker and sicker, more joints, more side effects, more pain,more swelling etcSo if you have positive info about Enbrel I am ready and willing tohear it. Thanks,e, with 14 y.o. with severe poly,not responding to anythingthey try!

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Hi Tree,

Thank you, for your words of wisdom. I know there's exceptions to every rule but thinking of all the people that I've gotten to know, who have Still's and JRA, or care for someone who does, they really are extraordinary people. I guess these are some of the reasons why : )

Thanks,

Georgina

..... her pain will teach her compassion,

her challenges will teach her to be creative,

her neigh sayers will teach her to be strong,

those that judge her on appearance, teach her that true beauty comes from within,

others impatience will teach her perseverance ... this list goes on and on

Learn to take one day at a time, destress whenever possible and celebrate her strengths whenever possible.

Change what you can, give the things you can't deal with to God, And laugh your buns off at the rest !!!

:):):):):)Tree:):):):):):):):)

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To the person who sees no response from Enbrel. Give it some time my friend! It saved my life. I'm almost totally pain free because of this amazing drug. It certainly takes longer than two weeks in most cases to work. For me it must take taken a few months for results to be felt. Hang in there and keep praying.

Todd

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In a message dated 12/31/01 1:49:52 PM Eastern Standard Time, mullytek@... writes:

To the person who sees no response from Enbrel. Give it some time my friend! It saved my life. I'm almost totally pain free because of this amazing drug. It certainly takes longer than two weeks in most cases to work. For me it must take taken a few months for results to be felt. Hang in there and keep praying.

I'm not sure if you were referring to me.................but my dd WAS on Enbrel longer than 2 weeks, and instead of better she became WORSE :(

Peace,

I.

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  • 4 years later...
Guest guest

Oh, I meant to say...

My doc says you can keep taking Enbrel when you're sick *except* for

bacterial infections like urinary and sinus infections. And then

you only have to stop as long as you're taking the antibiotics, assuming

the infection resolves, I suppose...

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