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Date: 25.06.2015
From: Helena

Subject: 6 year old with poly arthritis and entanercept

Hi there
We have been searching for a JIA forum so apologies if this site is for adults only but we are desperate for advise. My daughter has polyarticular JIA and has been on methotrexate for 7 months. This hasnt worked and steroid injections in most joints aleviate pain and stiffness but wear of after 6 weeks. It has been recommended that she now takes entanercept as well as a lower dose methotrexate tablet. We have looked into the research of entanercept and are concerned with its links to cancer and long term side effects which are still unknown as it is so new. I understand its only just approved by NICE for little children in the UK. We do not know what to do for the best. She cannot walk up and down stairs, stiff and pain in the mornings and we worry for her future on or off this drug. Any help or advise se would really appreciate . Thank you
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Date: 26.06.2015
From: lucy

Subject: Re: 6 year old with poly arthritis and entanercept

Hi Helena, Welcome to the forum. This site is for anyone with arthritis of any age. I am so sorry to hear that your little daughter is suffering with JIA. I can imagine the worry it must be for you. I believe entanercept is also known as Enbrel. I do know that there are a lot of people on it and it is making a great difference to them. It is a very difficult decision to make when they tell us what some of the side effects could be. I do hope some others will come on and offer some advice. The only think I can say is if she does go on it she will have blood checks and it would be stopped if anything untoward showed up in her blood. If they are going to reduce the methetroxate then it might not be any worse for side effects and if it makes her feel better it could be worth trying or perhaps there is something else that they could prescribe before going onto it. It is a difficult decision and perhaps more discussion with the professionals are needed. You could also call the arthritis helpline and see what information that they have on it.

I hope things improve for your little girl, I have heard that children sometimes grow out of it and there are newer drugs coming out all the time.

I really hope things work out for you both. xx
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Date: 26.06.2015
From: sleekfox

Subject: Re: 6 year old with poly arthritis and entanercept

I was on Enbrel and tolerated it really well until I got some neurological symptoms and was taken off . They are rare, apparently. I believe the cancer risk has been downgraded and they now say the incidence is no less than in the general population. It might be worth running your fears past your daughter's consultant and you could ask if there is another parent in a similar situation who might be willing to talk to you.

I certainly found Enbrel to much better tolerated than Methotrexate, which also didn't do anything for me either. I totally understand your fears for your child. It's not the same as making a decision for yourself. Best of luck in making it.
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Date: 26.06.2015
From: Christine

Subject: Re: 6 year old with poly arthritis and entanercept

Hi Helena, there is a site called Daily Strength that has a forum dedicated to juvenile arthritis. www.dailystrength.org/c/arthritis-juvenile/sup
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Date: 26.06.2015
From: Colin W

Subject: Re: 6 year old with poly arthritis and entanercept

hi Helena , in the link section above there is link to Arthritis care , they have a young people forum , also they have a free helpline for people in the UK as does National Rheumatiod Arthritis Society

as for enbrel & methotrexate , with arthritis you need to protect her joints & that is what these drugs do , I been on methotrexate since 1998 , enbrel is worth her trying , you may find it changes & improves her arthritis
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Date: 26.06.2015
From: Colin W

Subject: Re: 6 year old with poly arthritis and entanercept

http://arthritiscareforum.org.uk/viewforum.php?f=43

http://arthritiscareforum.org.uk/viewforum.php?f=10

My child has arthritis forum & Young people's forum
most people on arthritis care post on living with arthritis
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Date: 27.06.2015
From: Helena

Subject: Re: 6 year old with poly arthritis and entanercept

Thank you so much for replies and extremely useful links. We are going to the Queens Medical Centre for a 2nd opinion on the Entanercept in 2 weeks time but its looking highly likely that her arthritis will not go unless treatment is agressive now. :)
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