Life back with enbrel

My grand-daughter aged 11 was diagnosed with Juvenile RA her life was sport. Six months after diagnosis she sometimes only got one day a week in school being just able to walk.

She is now l3 and has gone through the steroid injections, methatrexate which didnt help and has now been on enbrel since last November. It has turned her life around to such an extent that the embrel has been reduced to a minimum dose.

At her next appointment with the specialist in April she is hoping to come off it. She had nodules in her feet etc all have gone back to normal. I wrote on this site before she began the enbrel having read frightening reports of cancer claims in the US connected to enbrel.

We now believe it has disappeared or she is in remission, would be grateful to hear from anyone with similar experience and whether the RA did actually go completely or how long the remission lasted.

I hope my blog with give hope to any parents with a child in a similar situation, enbrel has given my grand-daughter her life back.

18 Replies

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  • that is such good news,, she may however need a minimum maintenance dose?, I always feel that hormones play a part in RA and now she is at pubety ,hormones are flooding her body, this and the enbrel may help to explain her remission?,I have no similar expereinces but I know enbrel as great possible ra helper and maybe in your case a source of remission, the cancer reports are a bit scaremongering, in this country patients are pre screened to assess potential cancer issues ie already having cancer equals no enbrel!, children under sixteen not routinely given enbrel in uk.. normally mtx instead.

    Think the cancers likely to caused by enbrel are " blood cancers" such as lypmhonas we have regular blood tests as a screening/ warning tool in uk and some skin cancers, which can be avoided by appropriate sun protection x

  • thats sounds wonderful news. She most likely will have to have a maintenance top up.I'm sure her rheumy team will give good advice.

    Sometime USA can be a bit over the top with what can happen.

    Long may it last for your granddaughter very best wishes xx

  • Hi

    What a great blog to read and such good news, I think being diagnosed with RA is bad enough at any age but at 13 with her life ahead of her is tough. I'm no expert but to echo what Summer has said, I've been thinking a lot lately if hormones play a part in RA I know anyone can get it but it seems to attack more women then men.

    I really hope she stays well and continues to enjoy a full and active life.

    Best wishes

    Maddie

  • Sorry please excuse my ignorance! Diagonosed at 11 is tough.

  • what a fantastic blog .. :))))))) well done ,, grand daughter ,, i hope its remission forever ,, nobody can answer your question ,, only time,, you probably read lots of blogs ,, saying how RA returned after years n years ,, but very few saying enbrel put me in remision for good .. the reason for this is ,, people are more likely to right a blog , when seeking help .. but when everything is fine and dandy .. people

    don't generally bother .. this is why blogs like yours , are so beneficial for others .. so i would nt fear from what you read on the net to much .. its alot more negative then postive ,..

    fingers crossed for her .. :)))))

  • so sad being told that at 11yrs old, what a very brave girl hope her remission continues much love ali xx

  • It's wonderful to hear such good news about your granddaughter, I really hope she remains clear and can lead a normal life.

    Andy has said everything I would say, but just to add that I am about to start on embrel so it's really good to read such positive news. June xx

  • thanks for replying I'm sure it will work for you, it took 2 weeks of treatment before it kicked in with her, lets hope there's a breakthrough in research soon to put a stop to it.

  • thanks to all who replied to my blog on enbrel and my grand-daughter, grateful to all for such positive comments

  • long may her good health continue xx

  • What wonderful news :-) so happy for your granddaughter. Wishing her all the best for the future. Love Janet xxx

  • thanks for your lovely comment

  • Hi,

    I would just like to say what a wonderful outcome for your granddaughter, having been diagnosed at 10 albeit 50 years ago, I understand how fantastic this must be for her and your family. I tried Enbrel myself about 5 years ago, and found it to be a wonderful drug and I also met an ex sports teacher in hospital last year, who was visiting her Mother. She had been on Enbrel for 5 years, and was feeling brilliant. Thank goodness for Enbrel, and much luck to your granddaughter.

    Jenny

  • yes everything gets better doesnt it, I myself spent a miserable childhood with chronic asthma and now of course Im virtually free of it with the wonderful drugs, from what I read hopefully a breakthrough is likely in 4 or 5 years on gene research into RA

    kind regards

  • Fantastic news for your Grand daughter. Although no one should have to suffer what RA can bring, a young girl needs to be able to be active and not miss out on anything due to immobility and pain. I am (a very youthful!) 53 and starting Enbrel later this month. It is so encouraging to hear stories like yours and everyone's success stories. ;-)

  • thanks so much I am sure it will work for you it was just less than 2 weeks of her taking it that all pain faded good luck

  • Hi Raynorsun

    I'm really pleased to hear that your grand-daughter's condition might be in remission. Adult RA is a little different to the juvenile form, so it is probably worth getting in touch with some of the charities who deal with JIA (Juvenile Idiopathic Arthritis) for their experiences as well. We are in the process of branching out into the area of JIA and in the coming year will hopefully have a dedicated website for this condition, but in the meantime it might be worth contacting one of the following charities:

    Children's Chronic Arthritis Association (CCAA):

    ccaa.org.uk/index.php

    Arthritis Care (specific section for young people with arthritis):

    arthritiscare.org.uk/Living...

    I hope they will be able to help you further.

    Kind regards

    Victoria

    (NRAS Helpline)

  • Thanks so much for the useful information

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