Uphill days

ClaireH
ClaireH Member Posts: 2
edited 28. Nov 2023, 14:09 in Living with arthritis

Hi all,

My RA was identified in my teens. It sat quietly, only making its presence felt if I became ill. Now in my mid 50's, it has ramped up its efforts. I am on Sulfasalazine (6 daily) and regular pain relief, but with continual flare ups and new joints joining in, it all feels a bit uphill. Everything is an effort. I continue to work full time and try to lead a normal-ish life, but my downtime feels like recovering just enough to go back to work again, rather than enjoying life. I found myself Googling gadgets to make life easier, in floods of tears. If I can get the right balance of meds, will the progression be halted? I can live with my current level of function, further loss scares me and the pain sucks the joy out of everything . 😟

I would appreciate any advice or experiences with positive outcomes. Thank you, and apologies for the downbeat post. X

Comments

  • chrisb
    chrisb Moderator Posts: 757

    Hi @ClaireH  

    Welcome to the versus arthritis forum. 

    You were diagnosed with RA in your teens T which time it was less intrusive but now some years later symptoms have become more prominent with you experiencing regular flare ups. You’d like to hear from forum members who have experienced a similar journey and specifically is it possible for the right mix of meds halt its progression. 

    Please don’t apologise for feeling downbeat, its only natural to express how you feel.  

    Whilst you wait for some feedback you may find these links useful. This one is to an article on our website:

    https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

     

    This is a link to a recent forum discussion which you may wish to join in on:

    https://community.versusarthritis.org/discussion/58495/feeling-tired-all-the-time


    On Living with arthritis we have posts from many members who live with arthritis, I'm sure you will be able to find some other discussions you may wish to join in on or, if not, start a new one. 

    I hope you receive some useful advice. 

    Best Wishes

    ChrisB (Moderator)

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

  • stickywicket
    stickywicket Member Posts: 27,764

    Hi Claire and welcome from me too.

    I, too, was diagnosed in my teens but back then (1961) there were no modern DMARDS so mine just got worse. Admittedly, in fits and starts at first but my sons really started the rot😉

    I've now been on methotrexate and hydroxychloroquine for years and they've made a big difference. It sounds as if the sulf isn't cutting the mustard for you right now. How are your blood tests? And inflammatory levels? I think you need to ring your rheumatology helpline for advice. It sounds as if you might need either a different DMARD or another adding. Many of us are on two or even three.

    But do continue to google gadgets. Visit a proper (online?) disability store. My home is full of gadgets. I couldn't live independently without them. Nothing to be ashamed of in needing them.

    I don't think anyone can predict the future for any of us. It can take time for any new meds to work. Occasionally they don't and the process has to be started again. But we get there in the end. And so will you.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • frogmorton
    frogmorton Member Posts: 30,026

    I am wit stickywicket @ClaireH

    I think it's time you had a meds review a rheumatology one I also suspect maybe teh sulfa isn't enough for you anymore. It's fabulous that it's held your RA at bay for so long though which must bode well for future treatment options.

    Please do let us know what you do and how you get on

    Toni x

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