Does RA always get worse?

Sorry to ask a strange question but as a newbie to RA (earlier this year) theres still so many things i dont know. Unfortunately my rheumy nurse isnt as approachable and forthcoming with info as i would have liked!

I was diagnosed quite early after first symptoms and was just wondering if it always gets worse the longer you have it?

I know from reading questions & blogs on this wonderful site that i am very lucky compared to some people.

Once i get my medication sorted out could it keep it at bay and relatively mild or is it a foregone conclussion it will eventually get worse?

Thanks

Xxx

8 Replies

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  • no it doesn't . although like any "normal" person it can develop anywhere without being related to other areas

    I started at 21 and am now 55. My fingers get very painful, swell and distort but go back to almost normal - they are not twisted or out of shape. It is believed it was caught in time and kept relatively stable.

    hope that helps

    regards,

    sandra.

  • Thanks Sandra

    I have to date only had flare ups in wrists, hands and knees but can struggle through.

    Hopefully i can get meds sorted and it wont progress.

    I'm just so happy and relieved it doesnt necessarily mean i will decline rapidly!

    Thanks for putting a big smile on my face, i was getting into a bit of a deep dark place worrying about how bad i would get.

    Xxxxx

  • Hi Josie, when I was first diagnosed a few years ago I looked at stuff on the web and was convinced I'd end up in a wheelchair unable to hold a teacup. But for lots of us with the proper meds it's really not like that at all. In fact, apart from the RA, I'm probably in the best shape I've ever been! I now look after myself better, which has helped too, and really things are fine. Yes, you get some bad spells, and yes the meds can be a bit hard at times, and I have a few more aches than I used to, but compared to where I was when I was diagnosed I feel great! It'll always be part of your life, sadly, and it's hard to come to terms with that. But it's not the end of your life as you knew it..chances are that things will be ok - just a bit different. Pollyx

  • I remember asking my rheumy nurse the same thing last year, she didn't really answer my question, just went on about new drugs and how good they were. I was trying to understand the nature of the disease. Now I have found out how complex it is I can see there isn't a clear answer, and everyone is different! I know a couple of people diagnosed with RA who take only mild medication and maybe have a little hand stiffness, and another who has tried every drug there is and is constantly in agony and suffering a lot of damage. I think the best you can do is educate yourself as much as possible (though stay away from scare sites on the net) and try to live as healthy a lifestyle as you can.

  • Hi Josie, many years ago I'd have said yes in answer to your question. However, these days with good medications and treatments available this disease can be held at bay or even stopped in it's tracks.

    With early diagnosis and stronger medications such as MTX, Leflunomide, Sulfa etc, plus the Anti-TNF biologics, which, slow down the progression of the disease, life is so much better than it was just 15 yr ago.

    If the nurse is slow giving information ask to speak to another nurse or make an appointment for your GP that's if you have an understanding one!

    Good luck

    Beth xx

  • I think everyone is different.

    If you had asked me sixteen years ago, I would have said that my RA had finished with me - "burnt out" was the expression that the rheumatologist used. But six years ago it returned, in a rather different form and has been a bxxxxx nuisance ever since.

    I've been really lucky with lots of periods with no or hardly any pain and swelling in my joints. When I met a rheumatologist in one of my good phases he was amazed to see how mobile and fit I was, as he had seen me in a flare and expected me to be in wheelchair by then.

    So it varies enormously, but with modern treatment getting things under control and you keeping as fit and positive as you can, you can have a good quality of life.

  • No it doesn't always get worse. Like some other autoimmune rheumatology conditions it is possible to go long periods of time without active disease, but you can't rely on that and its also highly likely to respond really well to DMARDs and other treatments and be able to be extremely well controlled. Thats one of the reasons for guidelines to diagnose and treat early and quickly, so folk like you that get diagnosed before there has been time for damage to happen actually don't end up with permanent disability or damage.

    The big thing is to work with your rheumatologist and let them know clearly how any treatment is affecting you. Don't put up with drugs that aren't working or that make you feel ill (after a reasonable trial at full dose, which is usually at least three months), but keep asking "what can I do now" or "what else can I try". I just heard of someone who had taken 10 years to finally find a treatment for spondyloarthritis, which is a little bit different because they haven't yet found disease-modifying drugs that really work for it, unlike RA. Even though it took that long though, she finally got a treatment plan that has pretty much completely taken away all the disease problems and her life is back to normal. With RA, the chances of finding a treatment that works much quicker than that is a lot higher.

    Also don't forget that a healthy lifestyle, with appropriate low impact and joint exercise and perhaps some good physio when needed can make a world of difference to your future health. Get advice from a physio on how to exercise with RA though, as some things that people might suggest can actually put more stress on joints.

  • This link takes you to RA Warrior's 'Four courses of RA', it might help: rawarrior.com/four-courses-...

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