Sjögren’s syndrome

Ehibb01
Ehibb01 Member Posts: 3
in Chat to our Helpline Team

I’ve recently been diagnosed with SS, I have started a 4 week course of steroids and also hydroxychloroquine for the forseable.

I’ve been reading about the hydroxychloroquine and I just want to know if there is anyone else on here that’s a similar age to me (27). I’m nervous and worried about being on there for such a long time and the effects?


Any advice is greatly appreciated!

Comments

  • Anna
    Anna Moderator Posts: 1,100

    Hello @Ehibb01 and welcome to the online community,

    I’m not as young as you ( quite a bit older!) but I started on hydroxychloroquine when I was in my 30’s and have been on it now for over 20 years. It’s been great for me - really has controlled my rheumatoid arthritis and it’s one of the milder treatments so I’ve had very few side effects. I’ve been able to carry on my life raising two children, holidaying abroad, hiking and exploring, plus had a rewarding career. I hope that gives you some reassurance.

    There are several younger people on our forum so hopefully they’ll get in touch to share their experiences - it’s always good to chat to people of your own age about these things.

    If you want to find out a bit more about hydroxychloroquine, here’s a useful page from the Versus Arthritis website:

    https://versusarthritis.org/about-arthritis/treatments/drugs/hydroxychloroquine/

    Do let us know how you’re getting on,

    Anna ( Moderator)

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm


  • helpline_team
    helpline_team Posts: 3,777
    edited 1. May 2024, 16:19

    Hi @Ehibb01, I hope that Anna's message has helped to reassure you. Thanks Anna. To ensure Hydroxychloroquine is appropriate for you, the healthcare team will have carried out blood tests to check it is safe and they will advise that you have regular monitoring of your eyes. As with all medications, if you have any concerns please report them to your healthcare team, as there are a number of other DMARDs that they will be able to discuss with you. If you would like to talk to us please contact us on the helpline, 0800 5200 520, Mon-Fri, 9-6. Kind regards, Natalie, Helpline Advisor.

    https://www.versusarthritis.org/about-arthritis/conditions/sjoegrens-syndrome/#sj%C3%B6gren's-syndrome_treatment
    https://cks.nice.org.uk/topics/dmards/management/monitoring-of-dmards/

    Regards

    Natalie, Helpline Advisor

  • Ehibb01
    Ehibb01 Member Posts: 3
    https://community.versusarthritis.org/discussion/comment/721952#Comment_721952

    thank you so much, it’s nice to speak to people about it who understand. It runs in my family but they were all much older than me when diagnosed, so that’s why I get worried!

    Really helpful and reassuring. Thank you again x

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