Rinvoq (upadacitinib) for my 18 year old daughter

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Dawn1969
Dawn1969 Member Posts: 1
edited 13. Feb 2023, 09:37 in Parents of Children with Arthritis

My daughter was diagnosed with chronic seronegative rheumatoid arthritis almost 2 years ago at 18 years old and it is breaking my heart to see her suffer pain daily, weight loss & mobility issues having played football at grassroots level since the age of 7 and being so active in her teenage years. This disease is robbing her of her young adult years.

Last May she started adalimumab & Methotrexate injections which helped her have a fantastic summer and 2 lovely holidays. After 18 months on steriods she was tapered off them by Christmas and her health has drastically gone downhill to the stage she is struggling to walk again, put on her own socks and general day to day tasks. Her last inflammation marker was 77 a few weeks ago, on diagnosis she was in hospital with a marker over 100. The Rheumatology team at [xxxx] Hospital have been so helpful & supportive, she had a steriod infusion last week which only seemed to help for a few days. She has just changed her treatment to Rinvoq & Methotrexate. I managed to collect the new perscription from [xxxx] who were amazing & organised the collection of it within 24 hours of it being issued electronically which allowed me to do a 60 mile round trip on Friday so she could start her new treatment .

On the positive she has just passed her PE apprenticeship with distinction, she has her own car to give her much needed independence and a lovely supportive boyfriend.

She has heat therapy- aqua therapy & uses our hot tub to give her some relief, last weekend we did a spa day- sauna, steam rooms and massage.

I am looking to hear about positive results from Rinvoq as I have heard it can make this awful disease go into remission which is my dream. Day 3 of rinvoq ...praying it works

Thanks in advance.

Post edited to remove hospital name and name of drug suppliers as not allowed in community guidelines, Peter (moderator)

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  • noddingtonpete
    noddingtonpete Moderator Posts: 1,005
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    Hello @Dawn1969 and welcome to the Community. We are a friendly and supportive group and I hope that will be your experience as well.

    I understand that your daughter has rheumatoid arthritis and has now been prescribed methotrexate and rinvoq (upadacitinib). Also good to hear of your positive hospital experience - sorry I had to remove the name but under the community guidelines we try not to give out names of consultants or hospitals as everybody's experiences are different.

    I've put some information below from our website which I hope is of some use to you and your daughter about her new drugs.

    https://www.versusarthritis.org/about-arthritis/treatments/drugs/upadacitinib/

    and

    https://www.versusarthritis.org/about-arthritis/treatments/drugs/methotrexate/

    Please keep posting and let us now how she is progressing and I am sure that others will connect with you to share their support and experiences as well.

    With very best wishes

    Peter (moderator)

    Need more help? - call our Helpline on0800 5200 520Monday to Friday 9am to 6pm

  • Lottie1238
    Lottie1238 Member Posts: 4
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    Hi Dawn, I see you posted in February I hope your daughter is responding well to the Rinvoq. I thought I’d get in touch my daughter 19 was diagnosed with axial spondylitis and inflammatory arthritis in September. She went on methotrexate and steroids, unfortunately she still walks with crutches but things have improved. They are looking to put her on Rinvoq so she can come off the steroids and hopefully gain some more mobility. Because we were late with a diagnosis though she may have to have a hip replacement. I wondered how you got on with the Rinvoq. There are so many drug options which is great.

    My daughter learning to drive and enjoying a spa day or 2 . 😀

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