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Views on Entracept

charliebcharlieb Posts: 6
edited 9. Sep 2011, 10:45 in Young people's community
Hi All

My names charlotte and i am 19 years old i have had systemic onset juvinile idiopathic arthriis for 6 years , i am on high doses of prednisilone and methetrextate and have tried every medication possible and all the tricks in the book. I have had both hips replaced , metal plate in my knee and am due to have both wrists fused.

I have recently been apply for funding for a drug for toliximab (IL6) unforntunatly it has been declined twice , after trying one more time they have finally allowed me to have a chance at having the drug BUT ...

Yes theres always a but.. I have to trial Entracept for 3 months and then apply again..

What are peoples experiences with the drug?

Any information would be much appreciated ?

Thanks

Charlotte x x :)

Comments

  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Etanercept (aka enbrel) can be very effective. You won't know until you try, it is like all arthritis meds, what works for one does little for another. I hope you get on OK with it. Good luck, I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • andylambsandylambs Posts: 71
    edited 30. Nov -1, 00:00
    Hi Charlotte,

    My 6 year old daughter has been on Etanercept (or Enbrel) since last December. For her it's a wonder drug, she's in total remission with no active arthritis anywhere. She's previously been on MTX, steroids, a whole bunch of different NSAIDs, various joint injections etc etc. The benefits are well worth the weekly jab.

    Looking at your story I'm gobsmacked it's never been offered to you before.

    Like DD says it doesn't work for everyone. But it if it does work it has a lower failure rate than some of the other anti-arthritis drugs, DMARDs, because it's a TNF blocker rather than an antibody blocker (I think I got that right!)

    Good luck, I hope it works for you.

    Andy
  • illihorillihor Posts: 283
    edited 30. Nov -1, 00:00
    We've well my 4 year old daughter has just been started on this drug, so I can't help very much but have been told it can do a great many things.

    Andy I think the problem here is we are about 10 years behind america in medicine :( I was told by nurse from Bupa last week that America has had it 15 years but us way less and in fact down here Derriford (hossie in Plymouth) has only been offering/had the drug for 4 years so it's VERY new down here, probs explains why it hasn't been offered before. I hope it works for you and gives you some relief hugs

    Michelle xxx
  • andylambsandylambs Posts: 71
    edited 30. Nov -1, 00:00
    I mostly agree with you Michelle. We were extremely fortunate to be based in Seattle. Rheumatology at Seattle Children's started a new program just a couple of years ago where they decided to treat arthritis aggressively as soon as they could. Even compared with other American pediatric rheumatology departments they move onto the DMARDs "early". Pip has a pen friend (organized through the US Arthritis Foundation) who is treated in a completely different part of the USA, and her hospital does not have the same early and aggresive treatment plan.

    Seattle's results have been spectacular. If you're an internet research junkie you can find research papers and interviews out there from Dr Wallace and others in Seattle explaining what they are doing. Their basic premise is that if a child is not reacting quickly and satisfactorily to the initial treatments; NSAIDs, steroids, and with recurrence after joint injections. Don't hang around waiting for it to work, every day you wait more permanent damage is occurring in the affected joints. Move onto MTX, and if that doesn't work move them on again to a DMARD.

    Our doctor over there was convinced that by the time Pip is her 20s the drugs will have moved onto to such a state that they can hold arthritis completely at bay (not a cure for it never occurring in the first place). But that for Pip and her generation to make the most of these new theoretical drugs she needs to get through childhood and all her growing years with as little joint damage as possible.

    I'll get off my hobby horse now :D
    Andy
  • illihorillihor Posts: 283
    edited 30. Nov -1, 00:00
    that's great to hear Andy. So far the only thing Kayleigh has gotten is tired while taking it. Nothing else amiss at all still not seeing any benefits but then she only took 2nd dose yesterday lol

    It's interesting what you say about different parts of the US treating in entirely different methods. I know our local rheumy was very shocked and amazed that Bristol was saying to put Kayleigh onto Enbrel as she said surely we should wait longer (at that point she had been on methatrexate 8 months and it was still active) before trying a more agressive method. I had to agree with Bristol though and try this new drug as it's fine for the dr's to say let's hold off and see if it works better but they aren't the ones comforting and seeing their little one go through so much pain when potentially there is another drug that will help so much better.

    That's what I love about this site you get to find out such different information and can be so well informed when it comes to making a descision about treatment of our little ones. One of the reasons I agreed to Enbrel was speaking to you lot on here which I am so grateful for :D

    Michelle xxx
  • He1enHe1en Posts: 19
    edited 30. Nov -1, 00:00
    Hi Charlotte,

    I have also got Systemic Idiopathic Arthritis ( diagnosed when I was 3 and I am now 25)
    I first took Etanercept for 3 years during my mid teens. It worked well to start with but then I had a very bad flare and the Doctors took me off it and put me on Humira. After waiting a year for the Humira to work and still no results I begged the Doctors to put me back on Etanercept and immediately noticed the difference.
    For me it has changed my life - all the temperatures have stopped and I am much more mobile. I have even managed to reduce my Steroids right down without any Flare ups which was impossible in the past!
    I really hope you notice the same difference as me - it does take a while to notice the results when you first start taking it though, so be patient and Good Luck!
  • AnkyspondAnkyspond Posts: 626
    edited 30. Nov -1, 00:00
    I am 43 and been in t since last November it really makes an incredible difference, feel tired sometimes but thats all. Good luck. X
    AS Sufferer
    Live, love and enjoy life, live each day as though it's your last!
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