Hi I am new here, got Seronegative RA and Sjogren's Disease

CDB
CDB Member Posts: 1
edited 16. Jan 2025, 10:08 in Living with arthritis

Hello, I am a new member I was diagnosed with Sero positive RA and Sjogrens Disease in February 2023.

I am on my 3rd Dmard, failed 2. If Leflumode fails they are talking Biolgics.

At the moment I’m in pain everywhere. My eyes and mouth are so dry I do use eye gels and xylimelts but seem to be getting worse.

This is my current state but I will keep trying whatever and hopefully the magic ingredients that work for me will be found.

I send good wishes to you all.

Comments

  • claudsl
    claudsl Moderator Posts: 121

    Hi @CDB and welcome to our online community.

    I've found a couple of articles that may be useful to you;

    Sjögren's syndrome | Causes, symptoms, treatments

    Managing your pain | Treatments and self-help

    I'm sorry I don't have much knowledge on these conditions but I'm hoping someone who does might be able to help and advise further. Hopefully there will be some good information on those links.

    Take care, Claudia x

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

  • Hermione
    Hermione Member Posts: 21

    Hi CDB
    I’m very sorry to hear about your situation and send you my sympathy. RA and Sjogren’s together are a heavy burden, especially if the RA is not under control. I’ve had RA for many years and the first couple of years were awful, but fortunately the methotrexate did kick in after a while and things have calmed down a lot now. I really hope you find the right treatment to sort things out soon.

    I’ve had Sjogren’s for eight years and there are days where I just don’t know where to turn. It can be such a distressing condition. Unfortunately as you know there is currently no systemic treatment, only topical things like eye drops/gel and so-called saliva replacements (which I find pretty useless). I find Xylimelts useful. You can buy them VAT-free from a charity called Hope2Sleep https://www.hope2sleep.co.uk. You just have to declare a qualifying long-term condition (eg Sjogren’s). There is increased research into Sjogren’s and more things are happening in the background all the time now to try to find effective drugs. Any new drug takes years to get through trials and approval. I had a relative about 30 years older than me who had severe RA and there were no effective treatments in her day; but now there is a whole range of possibilities which were not available to her then, so let’s hope the same eventually happens with Sjogren’s.
    If you have not joined already, I strongly recommend the charity Sjogren’s UK (formerly BSSA).

    https://sjogrensuk.org

    The charity is currently undergoing a bit of change so not all the information on their website is up to date, but they have an excellent (I’m told – haven’t used it myself) helpline. They also have a network of local support groups. I joined mine in some trepidation, thinking they might be a bunch of moaners, but they were so welcoming and friendly and it has become a life-raft in stormy seas for me. You can let off steam in a caring and non-judgemental environment where everyone knows what you are talking about and doesn’t dismiss you or get bored, and you also feel that you are helping others to do the same.

    I posted a similar response a while ago (sorry I’m not at all technical so not sure how you get to this, but perhaps if you click on my username you may see previous posts).
    All the best – I really hope things improve for you.

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