Remission

Kittkat
Kittkat Member Posts: 309
edited 15. Mar 2013, 17:51 in Living with Arthritis archive
Hi everyone
I am 23 and have this yucky disease in a lot of my joints and have been undiagnosed for some time ( 2 years roughly).
Just wondered has anyone ever experienced remission/ lessening of pain on meds or without meds? The internet paints a pretty grim picture about the chances.
Thanks very much
How am I gonna be an optimist about this?

Comments

  • mellman01
    mellman01 Member Posts: 5,306
    edited 30. Nov -1, 00:00
    Hi Kittkat I'm surprised no ones picked this up yet but there you go, right is it RA your on about?, if so I can't help you much although I'd have thought that once you have it you've got it for life but I'm no expert, that said if it's like OA then you'll defo get times when it's as if it's magically Disappeared and for some time only to have it stick it's flippin head up and then have another go at you.
    I've had patella OA for 7 years (post OP) and it plays all sorts of tricks on me, even now it can calm down so much I feel as if I've never had it and then what I normally do is go overboard and start doing the things I use to love only for it ot return and kick me back down.
    Personally I take the good with the bad these days and just enjoy the mobile pain free times and to hell with it!.
    Anyway I hope someone with RA turns up soon to help you out, take care for now.

    Mell
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    Hi kittkat
    Like Mell says there are good and bad days..I do try and make the most of my good days... I have OA in multiple joints...I do think you learn to live with it...the one good thing that has come out of mine is I dont worry over silly things anymore...ie the housework....another thing that my physio said was that the joints when fused together can cause less pain....its called the burned out stage...mine haven't got there yet...Its very quiet on here at the min...but hopefully others will be along very soon xx
    Love
    Barbara
  • scattered
    scattered Member Posts: 326
    edited 30. Nov -1, 00:00
    Hi kitkatt,

    Remission is a very tricky concept. It all depends on what you mean by 'remission' and the word means different things to different people. I have never been in the medical definition of remission, i.e., with a DAS 28 score of less than 2.6. I once got close with a score of 3.7 and I think that was as close I'm ever going to get. For me 'remission' means less pain, less swelling, less stiffness and more mobility. It doesn't mean those things have gone away, it just means they are more manageable. I achieved my version of 'remission' through medication and any attempts to lessen the meds made everything a lot worse. The RA was that well controlled for about a year, nearly 3 years after diagnosis.

    I'm 25 and I was diagnosed at 19. Perhaps now I'm a bit more cynical about 'remission' and everything it entails. I think, in my first few years with RA, I wanted to believe that 'remission' meant that all my symptoms would disappear for a very long time. That hasn't proven to be the case, although I am very grateful for the year I did have when things were much improved. That said, my goal is still to achieve a 'remission' although now my definition has changed somewhat!

    A quick word on the internet: wonderful as it can be, it is also very dangerous to look up things like RA online. For the most part, those that are doing really well don't post things online because they don't need to, hence why you only find stories of people struggling with their disease. It's the same with support groups. People use the resources when they need them and move on when they don't. There are lots of very good medications for RA out there and even more in the pipeline. They work for the majority of people, so please don't be too disheartened.

    Take care,
    Scat
  • MumV
    MumV Member Posts: 71
    edited 30. Nov -1, 00:00
    Hi Kitkatt,

    my daughter is 20 has lived with what was aggressive JIA from 13/14, she has had ups and downs, but her present position is positive. :D

    My mother Day present was a happy picture of her participating in a sporty event at Uni :D.

    I wonder why you are un diagnosed? It concerns me to hear this, does this mean you have no treatment also?

    This forum is a good place for caring and sharing and asking. Diagnosis is for consultants.

    Wellness wishes for you, Good control or oh yes hopefully Remission .keep asking, and keep hoping.

    Kind regards MumV :)
  • Buka
    Buka Member Posts: 43
    edited 30. Nov -1, 00:00
    Hi Kittkatt,

    I've had RA for nearly 13 years. The first few years were pretty awful trying new drugs and attempting to find what suited me. However eventually I was put on an anti TNF (humira) which was brilliant and for two years I had a much better life and felt almost painfree. I was so well I opted for surgery which meant I had to come off the humira and when I returned to it a few weeks later it didn't work as well again. So there will be ups and downs - this disease can be so difficult to control but it can be done and you must hold that thought. I am now feeling really well and have got back on my bike and into a swimming pool again. I am looking forward to a trip to france for the summer and when I return I shall job hunt again. So it's not all 'gloom and doom' - it just feels scary sometimes and the internet doesn't always help. Try and keep positive - there are a lot of brilliant medications out there and hopefully one of them will suit you well. It wont go away but it certainly can be managed. Good luck,

    Buka
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Hello kittkat. It’s good to meet you. I wholeheartedly agree with scattered that remission is a tricky concept.

    Mine is RA. I was diagnosed at 15 and for the first few years I was ‘in and out of meds’ – sometimes on steroids and sometimes on nothing. When pregnant with my first child my RA just went into complete remission – no meds at all. It flared after he was born and I’ve never been ‘med-free’ since then but that doesn’t mean to say life has been an unmitigated disaster. I’m 50+ years into my arthritis now and, in just over a week, I’ll be flying out to Los Angeles again to see him and my younger grandson. I’ve been pretty good for over 10 years now on methotrexate and hydroxychloroquine.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I've been arthritic for sixteen years and on meds for eleven, over that time my pain has continued to increase and spread but that's probably because I started them too late to make any useful difference. I need to take my pain relief to dull the sharper edges (I'm off now to do just that before I start work). The interweb is not the fount of all knowledge: nobody knows how their version of arthritis will develop over what period of time - we are all unique in that. It is dismal that you have started with this at a young age - what form of arthritis do you think you have? Mine is psoriatic which has led to osteo. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • charleeh
    charleeh Member Posts: 173
    edited 30. Nov -1, 00:00
    Hi,

    I am 22, 17 when I first fell ill. I was un diagnosed for a long time too, the specialists at the hospital told me firstly that it was reactive arthritis that would be gone in 3 months, then it went to 6 months. Then they said that it was rheumatoid arthritis, then they decided finally about 2 years in it was sero negative arthritis as they couldn't find any rheumatoid factor in my blood. (however they did put me on various medications, I didn't have to wait for a diagnosis, it was clearly some form of arthritis)

    As for remission, I have never gone in to it, but people do. I sort of stabilised on methotrexate for 3 years then went in to flare again. The medication definitely helps, although I long for a natural alternative! I am now on a drug called Toculizumab (probably not spelled like that)

    Pain management is important though, to keep me off the tramadol I meditate and do Tai Chi exercise on the days that I can manage to, this way the joints stay flexible and I am using my muscles too, but not too much. I find stress sends me in to flares.

    Best wishes,
    Charleeh
  • Kittkat
    Kittkat Member Posts: 309
    edited 30. Nov -1, 00:00
    Thanks for your helpful replies everyone!
    How am I gonna be an optimist about this?
  • Firemanphil_39
    Firemanphil_39 Member Posts: 66
    edited 30. Nov -1, 00:00
    Chin up! I've had PsA for a coupe of years.. Now been on anti TNF for over a year and got total remission... Cycled 60 miles yesterday... Doing a half ironman triathlon in June...

    Stuff I never imagined I'd do after reading tinternet...
    X