#%*&! No remission. Now talking Enbrel

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Tracy1

Posted Tuesday, May 12, 2009 9:36 AM

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Last Login: Sunday, October 18, 2009 10:26 AM
Posts: 58, Visits: 20

This is absolutely NOT what was supposed to come from last week's MRI.

They did an MRI (sedated) of her left foot as the last check on the way to remission since she has been symptom and pain free for a year on MTX (weaned off of Naproxsyn about 6 months ago. Or longer? She's on 0.3 inject. MTX. She has a 'sausaged' 2nd toe on her left foot and it has been like that for 3 yrs. Everytime we've gone they look at it and note it, but never seem terribly concerned about it and say that it will always look like that but she'll grow into it and it won't be as obvious. They've never done a joint inject on that toe and when they did her knee, they didn't even discuss the toe.

So this MRI. The arthritis is still active. Definitely. Swelling and effusion (sp?). The dr. wants to consider Enbrel at the next appt.

Ya'll enbrel scares me to death. Tell me about this drug.

And doesn't that seem like an overreaction after 2 yrs of treatment? Wouldn't it make more sense to increase the MTX, if anything? The toe doesn't hurt, doesn't bother her, nothing.

I'm just devastated and ya'll are the only ones that know anything about this stuff in my life. Thanks in advance,

Tracy,
Cassie's mom, age 6 JPsA

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HUGO NUNEZ

Posted Tuesday, May 12, 2009 2:45 PM

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Last Login: Friday, July 24, 2009 3:46 PM
Posts: 3, Visits: 15

TRACY, TRY HOMEOPATIC MEDICINE. IT WILL HELP YOU. SORRY I DONT SPEAK ENGLISH.

GOOD BLESS YOU ALL. HUGO NUNEZ

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Laura Faust

Posted Tuesday, May 12, 2009 3:30 PM

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Last Login: Friday, September 11, 2009 1:58 PM
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Tracy - I would talk candidly with your rheum and if you are in area that it is possible, get a second opinion. Also as Hugo responded - a combination of Mtx and homeopathic might help too.

I was in your shoes over 2 years ago. We could not increase Mtx because of side effects and effects on liver everytime we tried. My daughter started enbrel at age 3 and did very well on it in combo with mtx. Recently enbrel started to lose effectiveness - we have switched to Humira and mtx, but am also adding in homeopathic - diet and other supplements to see if it will help.

Drugs are scary - but for us, we couldn't stand to take risk of permanent damage in our daughter's joint.

Talk with dr and find out more options and downside of waiting and no more additional drugs....also look at diet changes - research seems to show this helps some in adults - but it is very hit or miss individual based.

Good luck!

Megan

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Juile

Posted Tuesday, May 12, 2009 3:52 PM

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Last Login: Wednesday, November 18, 2009 12:48 PM
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Tracy,

First of all I want to just say how sorry I am. I have read many of your posts and I know how long you have been waiting to get her off all the meds.

I know it's scary to have to start another powerful medication - but remember how scary it was in the beginning when you first started mtx. It has helped your daughter a lot and maybe the enbral will be what completely knocks the arthritis out. I think you definately should talk to your doctor so he can better explain why he thinks this is neccesary.

The first time we weened Nicole off her meds she did fine for two months and then flared again really bad. It was crushing. I am really sorry it had to happen to your daughter.

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Mom to Alex

Posted Tuesday, May 12, 2009 6:10 PM

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Last Login: Sunday, November 15, 2009 7:33 PM
Posts: 86, Visits: 164

I'm still new to this world...but I am so sorry. I know nothing about Enbrel but our rheumy feels Alex will need Humira starting this summer...so I know how scary this time is.

I wish you all the best.

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Kerri Thomas

Posted Thursday, May 14, 2009 11:43 AM

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Last Login: Wednesday, October 28, 2009 10:58 PM
Posts: 14, Visits: 18

I'm sorry you didn't get better news from the doc. How crushing to think you may be towards the end of the battle, and then have to start a new med. I'm still new to all of this, so I don't know anything about Enbrel. I hope you can find enough info to calm your fears, and hope you can speak further to your doc about your concerns. Keep us posted.

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Wanda Vanhorn

Posted Saturday, May 16, 2009 11:58 AM

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Last Login: Thursday, October 29, 2009 11:23 PM
Posts: 46, Visits: 47

7 yr old has been on Enbrel almost a year. She started out on Naproxen which she ended up being unable to take as it gives her horriable mouth sores. She was then placed on Mobic that didn't do anything for her. We switched peds rhuemy (started going 2 1/2 drive away) the rhuemy added MTX which only gave her the mouth sores at her full dose. Dr cut her dose and she still got mouth sores. So her MTX dose was cut even more and Enbrel added. Enbrel has really helped.

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Ella's Mom

Posted Monday, May 25, 2009 4:48 AM

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Last Login: Today @ 1:20 AM
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Hi Tracy,

I'm very sorry that you didn't get better news - it's incredibly frustrating to go into an appointment expecting one thing and hearing something else entirely! I was very nervous about Enbrel as well when my daughter started it at age 2 yrs. 3 months. She went from having 22 joints affected to 0 over a period of 9 months. She was not taking MTX with Enbrel, just Mobic. There's a lot to consider and there were certainly some things about Enbrel that we really didn't like but it's effectiveness for my daughter was undeniable. Regarding her age, I questioned the use of such a strong med for a 2 year-old as well and was told by her rheumy that if we didn't get her joints under control now that she would have permanent damage.

Good luck with whatever direction you decide to go!!

Melanie, mom to Ella, 3 poly jra

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Vicky

Posted Monday, May 25, 2009 3:25 PM

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Last Login: Today @ 8:05 AM
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Hi Tracy,

So sorry that your daughter is having this set back. Our daughter (2 December 20, diagnosed December22), has been on the MTX and Enbrel combo since February 26, 2009, and it has dramatically changed her life for the better. The MTX and Naprosyn just didn't cut it. Before she was diagnosed we thought only 1 knee was affected, but it turned out it was five joints. I can't imagine thinking you're done with this crap only to be told you need to consider a biologic. It really stinks. But, as terrified as you are of the Enbrel, I want you to know our daughter has had no ill effects thus far, and is doing really well. Hang in there.

Vicky

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Lesli Wright

Posted Saturday, June 06, 2009 11:18 AM

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Last Login: Saturday, June 06, 2009 11:58 AM
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I just wanted to say hello and let you know that I DO know how you are feeling... it is SOOOO frustrating!! My daughter is 2 1/2 and she has been on MTX For over 5 months with NO CHANGE.. actually she was diagnosed last MARCH and has not been in remission ONE time since then. The only time she has felt well was when she was on prednisone..(for five months) and we know we can't keep them on a steroid for a long period of time,nor do I want to!

We just started enbrel this Wednesday, No I didn't want to but I feel that I have NO choice!! I do not want her to have irreversible joint damage in the future so WHAT DO YOU DO??? As all of us parents, we just want our child to feel well and we will do WHATEVER it takes to make that happen. I am hoping this medicine will be an answer to our prayers!!

Good luck with everything.. I hope your daughter starts feeling better SOON!

Lesli, (mom to Ayla 2, poly JRA)

Lesli-onedayatatime.blogspot.com

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Laura Faust

Posted Monday, June 08, 2009 1:37 PM

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Last Login: Friday, September 11, 2009 1:58 PM
Posts: 36, Visits: 49

Hello - I hope the enbrel helps. My daughter was on it for a little over 2 years - it is did wonders for her. The fear of the future side effects never goes away, but for my husband and I, we felt we had not choice and we are glad we took the step. She went from a quiet sedate child and constant discomfort to a happy, active child.

We just recently stopped the enbrel as it was starting to lose its effectiveness. We went from thinking she was close to remission - to flare -ups - to new meds and new worries. When she was on enbrel - she had no adverse side effects whatsoever.

Good luck!

Megan

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Lisa Cronstrom

Posted Thursday, June 11, 2009 11:55 PM

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Last Login: Thursday, June 11, 2009 11:49 PM
Posts: 1, Visits: 1

My Granddaughter is 2, recently diagnosed with Systemic JRA...She has been on Predizone in the beginning...then MTX 1 a week...now the dr. wants her on Enbrel(3 meds).....so hopefully we can get her off of the Predizone... We would like to combine the Naturalpathic ...We are in Arizona ....does anyone have any referrals??? Thank you ...Lisa

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Wanda Vanhorn

Posted Monday, June 15, 2009 10:49 PM

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Last Login: Thursday, October 29, 2009 11:23 PM
Posts: 46, Visits: 47

Sorry to hear dr. appoint did go well.

I have an 8 yr old who has been on Enbrel yr. She has been unable to take it at times due to infections and we thought she was allergic (she's not). It has done wonders for her.

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