severe seropositive ra flares

lindag13
lindag13 Member Posts: 1
edited 23. Oct 2024, 09:03 in Living with arthritis

hello, i have just joined this group seeking help and advice about how to continue living with severe seropositive ra, i've just had another really bad flare all joints, knees, wrists, elbow, ankles, jaw, bed bound for 72 hours, soiled my bed couldnt get to the toilet on time, had to wee in bedpan for 72 hours, couldn't stand on legs, i am on plaquenil and cocodamol for pain i am type two diabetic with high blood pressure, i am finding it difficult to continue on whilst having this condition, i am sorry if this all sounds horrible but i have to be brutaly honest with the reality of this condition of the immune system, i was diagnosed at age 19 years, and through my 20's, 30's and 40's it was livable with ibuprofen and diclofenac, they did offer me the new drugs but i said i'm ok on these for now, but in my 50's is when it got really bad, for taking nsaids for years they gave me a stomach ulcer, so had to stop those, i am 55 years old now and getting weaker each time, i know i am not alone with this, i know many people are suffering with this but it is a loosing battle for me now, i am so very tired of having to live with it, any help and advice will be warmly welcomed, thank you,

Lindaxx

Comments

  • Anna
    Anna Moderator Posts: 1,081


    Hello @lindag13 and welcome to the online community,

    What a difficult time you’re going through at the moment. We can never get used to these flare-ups can we, no matter how long we’ve lived with arthritis. Would you be able to speak to your GP about how difficult you are finding it to manage ? You may be able to be referred to an occupational therapist who could look at your home and recommend equipment to help you in your daily life. It might also be time to look at your medication and maybe consider the new drugs that you mentioned? Biologics have been very successful in treating RA, so they might be worth discussing with your medical professional.

    Finally, if you want to chat to someone who understands what you’re going through, then our free helpline is open from 9am to 6pm each weekday. They’ll provide a listening ear, and can also help you with information and advice tailored especially for you. Here are their contact details:

    Please keep posting and 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


  • Hi @Lindag13, I’m so sorry you are struggling with flares. Have you informed your Rheumatologist or rheumatology nurse?

    Your treatment regime might need to be upped

    You can self refer to OT via the council(this will be quicker).

    I use incontinence sheets and underwear during a flare as really difficult to reach the toilet in time.

    For pain - I use diclofenac cream on joints affected, Dihydrocodeine & paracetamol. I’m also on medication for fibromyalgia

    On my current RA regime I’m no longer having the multiple joint flare ups (though not yet in remission)

    It is difficult and I remember how scared I was when I had the first severe flare up where I couldn’t move - it felt like my brain was just overwhelmed by pain. And it can be so depressing being unable to do basic daily functions but I’m getting better now and feel hopeful again.

    Don’t despair, hopefully you will get the right medication and start improving too