Unsure about starting treatment.

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ces109
ces109 Member Posts: 4
edited 28. Nov 2023, 14:04 in Living with arthritis
Hi,

Recently diagnosed with rheumatoid arthritis at the start of October. Following 3 months of severe joint pain in knees, feet, hands, wrists, shoulders, elbows and jaw. Often resulting in loss of movement in the evening. GP referred me to rheumatologist, diagnosis made on first appointment with rheumatologist. Which came as a shock, I was commenced on Arcoxia and provided with information on immunosuppressant medication. The medication recommended was sulfasalazine. My second appointment this month was for starting treatment, I have decided not to start medication. I have been symptom free for past 4 weeks but I understand arthritis works in flare ups. I feel I am taking a risk testing things out without treatment. This has all come as a huge shock and I don’t feel I have accepted the diagnosis as it all happened so fast. I’m also worried as my recent bloods have shown increased white cells but I have no signs of infection, is this common for RA? Considering a second opinion.


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Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hello ces109,

    Welcome to the forum, it’s lovely to meet you. You had lots of pain in a number of joints so went to your gp. I’m guessing he did some tests, asked questions and such before he referred you to a rheumatologist.

    They diagnosed you with rheumatoid arthritis. It’s unlikely they are wrong, they will have looked at your joints, seen blood tests and/or other tests that your gp initiated and then have come to a decision.

    You say you were started on Arcoxia, which is a non-steroidal anti inflammatory drug (NSAID). These are used to reduce inflammation and pain in joints. They aren’t a cure and they don’t prevent damaged caused by your white blood cells attacking your body. This is why you need to go onto a disease modifying drug such as sulfasalazine. This drug will dampen your immune system with the effect of reducing your white blood cells so they can’t do you damage.

    So yes you would be taking a risk, almost certainly causing damage to your joints. Once damaged they can’t be mended so it’s best to catch this disease early to prevent that happening. Perhaps you are symptom free due to the arcoxia.

    Here is our leaflet on RA or rheumatoid arthritis

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

    Let us know how you are planning to continue and if we can help

    Take care
    Yvonne x
  • ces109
    ces109 Member Posts: 4
    edited 30. Nov -1, 00:00
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    Thank you so much for your reply. This is my first time on a forum and It’s been really helpful, also reading other topics here have been so informative. I will be giving consideration to the treatment. It’s just been hard to accept treatment when I’m still almost in denial about the diagnosis.
    I have a follow up appointment before Christmas to decide on treatment, the rheumatology team have been great and giving me the time to decide. I would be interested to hear other people’s experiences with the disease modifying medications/ sulfasalazine.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I have a friend who has the same auto-immune arthritis as me, psoriatic. It is related to psoriasis, an auto-immune inflammatory condition, but neithernof us have much bother with the skin side of it.

    He was diagnosed over ten years ago and quite quickly too because he presented with the right symptoms in the correct joints. He began sulphasalazine and is doing fine, still working, still doing some sport, still carousing at the rugby club. He has never joined a forum because he has no need, his natural assumption is that everyone's experience of arthritis is like his.

    My story is very different and therefore of little benefit to you: I was born with auto-immune junk so this was always on the cards. It must be alarming to have one's previously well-behaved body turn against you, I think I would be equally concerned if mine suddenly turned for me. It never has and it never will, I appreciate the certainty of poor health because I will never lose it.

    I can uncerstand your concern at taking the meds, I've been on them for years with very little bother from side-effects: if you google pictures of the damage caused by untreated RA you may feel a little more inclined towards the idea. This is a vile disease, it cannot be treated by wishful thinking although many have tried. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • ces109
    ces109 Member Posts: 4
    edited 30. Nov -1, 00:00
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    Thanks for sharing your experience. It’s reassuring to know that the treatment has proven successful for your friend and that you have not had many side effects. Yeah I agree the hard part is the accepting that my body has turned on me. I am 29 years old, and have never before had any major Health problems. Now I’m having to come to terms with a potential life long illness that requires treatment.


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  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    ces109 wrote:
    Now I’m having to come to terms with a potential life long illness that requires treatment.


    There's no 'potential' about it, ces109. It starts slowly and then, if unchecked by DMARDS, gathers speed. I was diagnosed at 15, before modern DMARDS and it had a field day. My life changed for the better once DMARDS arrived but, by then, the damage was done. I have, luckily, escaped the greater ravages of RA in that, to the best of my knowledge, it has not got to my internal organs but it can.

    To my way of thinking, if you eschew DMARDS you really compromise your future.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright