RA progression

caprica
caprica Member Posts: 195
edited 17. Aug 2010, 09:29 in Living with Arthritis archive
Just wondering how your arthritis progressed? How long before it majorly impacted your life?

Comments

  • frogmorton
    frogmorton Member Posts: 29,884
    edited 30. Nov -1, 00:00
    Hi Caprica

    How are you doing lovely?? :)

    I think it varies, but from what i am told (some have a quick onset which takes some sorting out) but others its is a case of flares which have fairly large gaps between them - they can get closer in time over the years.

    The longer the better eh?? :wink:

    Love

    Toni xx
  • williamlargs
    williamlargs Member Posts: 143
    edited 30. Nov -1, 00:00
    caprica wrote:
    Just wondering how your arthritis progressed? How long before it majorly impacted your life?

    Hello Caprica

    Very much varies from person to person. I am very much one of the lucky ones I think.

    I was diagnosed in 2003 at the age of 43. I was imediately put on sulphasalazine which worked extremely well to the extent that at my request I was permited to stop it 3-4 years later.

    Since 2003 I have been able to continue playing football and hill walking. Also managed the west highland way in 2006.

    Unfortunately the RA has recurred this year and I am now on MTX plus a cocktail of diclofenic and paracetomol which more or less allows me to function as normal, minus the football much to my digust :(

    Who knows what the future will bring but I am determined to fight it head on.

    There are a lot of lovely people on here in constant pain and how they cope and still have time for others is beyond me. Total respect and all that.

    What I trying to show is how variant RA is in how it affects different people. As previously mentioned I am very much one of the lucky ones and hope to continue thus. I very much hope you are too :)

    Kind Regards
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Mine is progressing beautifully, usually at a steady rate but then with a rapid burst of further deterioration. It's altered everything beyond all recognition. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • caprica
    caprica Member Posts: 195
    edited 30. Nov -1, 00:00
    Thanks for your replies, guys.

    I am just curious because it is so varied, isn't it. The doctors don't give you any answers when you ask and it's better to hear real people's stories anyway.

    Toni, I'm doing very well thanks! I don't want to jinx myself by saying it, but I've been totally fine since april so..yeah.. trying to enjoy the summer and training for a 50 mile chairty bike ride next month..eeek!! Hope you're well? Did you go to France yet?
  • frogmorton
    frogmorton Member Posts: 29,884
    edited 30. Nov -1, 00:00
    Hi Caprica

    So very glad to hear you are doing so well. Long may it last eh?

    Well done for getting on with it too - exactly what you should do

    Love and hugs

    Toni xx
  • lindalegs
    lindalegs Member Posts: 5,397
    edited 30. Nov -1, 00:00
    Mine came on overnight with a massive flare after the birth of my second child, so the impact on my life was immediate and extremely dramatic. :shock:

    Luv Legs :roll:
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    The doctors can't answer such a question. It's too individual. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Caprica

    For me one of the hardest things about RA is the fact that there are no easy answers and everyone is different.

    For me, RA sort of spluttered into being a couple of times, I didn't know what it was, ignored it, and it went away, then when it arrived properly it had a dramatic impact, affecting many of my joints within just a few weeks. Since that time, 14 years ago, it has been a series of ups and downs, although joint deformity has, thankfully been kept to a minimum due to the drugs.

    Sounds as if you are doing really well Caprica and whatever you are taking really has the RA under control. So pleased for you and hope it continues. And very best of luck with the bike ride!

    Love Tilly x
  • wibberley
    wibberley Member Posts: 421
    edited 30. Nov -1, 00:00
    I have JIA which is slightly different and in the past it has come on quite acutely and then burnt itself out after a couple of years.

    Happened again last year and not sure how it will go now that I'm 44. I have tentatively dropped the odd dose of sulpha, but felt a few twinges so hurriedly returned to 2 tabs twice daily.

    I wish there was a definitive answer but with arthritis, that is far from the case.

    Good luck with the cycle training Caprica!

    Lois x
  • caprica
    caprica Member Posts: 195
    edited 30. Nov -1, 00:00
    Yeah I am starting to realise there isn't an answer...it's just interesting to read different experiences and learn. Thank you all for replying and I hope you get to enjoy the weekend, meant to be nice weather...although nice weather for us in Scotland means 'it only rained for a couple of hours'...
  • whitey44
    whitey44 Member Posts: 36
    edited 30. Nov -1, 00:00
    Hello Caprica

    The Rheumy said I had a slow growing form of RA and it would take approx. ten years before I would be in a wheelchair.

    Six months after I was diagnosed in 1989, Arthur said, "Here I am!" My whole body, including jaws, was affected and both my index fingers became "swaned neck" and every finger had nodules. I became so conscious of my hands, because people kept asking me what was wrong with them, I took to wearing gloves, all day, everyday.

    I was stuck in the house for about three months. I was offered disease modifying drug but decided against it because I felt, at the age of 33 years, I preferred the odds without the side effects.

    An acquaintance who worked in the Holistic field advised me that I should have accupuncture to save my hands because on viewing them, he believed I would lose the use of them within one year of being diagnosed; he saved me from having clawed fingers and the nodules disappeared and I stopped wearing my gloves.

    I decided that Arthur was just a nuisance! Nothing and no one was going to rob me of my independence. I was so lucky that I had worked for the same company for thirteen years; despite the drastic change in my physical ability (I went from being the hare to being the tortoise) they encouraged me to return to work; carried and fetched for me, gave me time to rest, in the staff room, when fatigue set in. My extended family are tremendous!

    All this, together with paying attention to my taste buds/listening to my body (if they didn't like the food/drink, I cut it out. If I craved something, I had it), swimming, walking (with extreme difficulty), massage and accupuncture, helped me to carryon despite major flare-ups.

    The erosions in my hands and feet have been getting worst over the last two years and I felt, instinctively, it was time to go on Methotrexate. I think what I am trying to say is, trust your instincts and above all, REMAIN POSITIVE, think about what you want, not what you don't want.

    Pure wishes and love

    Whitey :D XX
  • catlady
    catlady Member Posts: 41
    edited 30. Nov -1, 00:00
    Mine came on in April this year, at least that;s when the symptoms began in earnest. Just the odd twinge before that for a few weeks. My GP was brilliant, referred me straight away after blood tests confirmed RA, and said a cold virus after Christmas had probably triggered it. Wouldnt it be great if something could switch it off again :? :? :? . I started MTX three week ago and so far so good. Some days are better than others. Jenny :lol::lol:
  • donnas
    donnas Member Posts: 119
    edited 30. Nov -1, 00:00
    Interesting how we're all so different.


    Aged about 10 I had mysterious "growing pains", which persisted, and my poor Mum thought there was something wrong but my GP dismissed it.

    Aged 16 I had acute bursitis in the shoulder, requiring intra-articular steroid injection.

    Then my feet deteriorated and I could barely walk, with ankles, toes then fingers, wrists, jaw and neck being affected by age 19, when I was eventually diagnosed with RA. I had multiple nodules in my fingers, treated by injection and then an operation on the worst one.

    I was put on strong NSAIDs, (gave me stomach ulcers), hydroxychloroquine (affected my eyes) and eventually sulfasalazine (by age 22 or so), which I only tolerated for a short while as it made my headaches worse.

    The flare up subsided by age 27 or so, and I began to lead a normal-ish life again after pretty much losing my teenage years and young adult hood to the disease, with little support.

    Since then I've had problems in most of the areas affected, with myalgia and incapacitating headaches being more problematic than the joint disease until recently.

    I'm 42 now, and I've had three flare ups in the past year, and I'm back on the sulfasalazine and NSAIDS. I am particularly scared of the NSAIDS having seen my endoscopy photographs, and I'm not tolerating the sulfasalazine very well, and my lymphocytes were in my boots for weeks, making me feel absolutely awful, fatigue is through the roof.

    Joint erosion is limited to my toes, but I have some signs of osteoporosis in my toes and fingers due to all the steroid injections.

    I'm struggling with the relentlessness of it all at the moment after such a long time thinking it wasn't coming back.

    I work 4 days a week, and walk as much as I can for exercise but find lots of things tricky and find shoes difficult, and doing things with my hands to be a problem. I can't play the piano anymore and this is quite distressing.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Have you ever been given the cahnce to try and anti-TNF treatment? They do work very well for some and you sound like a candidate donnas. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • donnas
    donnas Member Posts: 119
    edited 30. Nov -1, 00:00
    The only other drugs I've been offered are gold injections and methotrexate. I think I'm relatively lucky with my level of functioning really.

    A magic wand would be nice though!

    <poof!> and her arthritis was gone!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh hun, that's not much is it? My consultant has tried me on tablet methotrexate, leflunomide and cyclosporin - none worked but at least we tried. I have also had infliximab and enbrel, both anti-TNFs. I am currently taking injected meth, injected humira (anti-TNF), sulphasalazine (max daily dose), naproxen (anti-inflammatory) and oral steroids. My inflammation is under control but my pain levels have remained high, so it's co-codamols and/or tramadol for that.

    I am certain more could be done for you - perhaps you could suggest to your rheumatology consultant that it's time for a review. I am no expert but I have had years of battling with my PA and I don't think they are doing enough for you. It's just a thought. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • wibberley
    wibberley Member Posts: 421
    edited 30. Nov -1, 00:00
    Donnas, you and I seem quite similar in that we were diagnosed young and then had relapses in our early 40's. I blame the dreaded hormones for mine coming back - had been suffering pmt/mood swings/anxiety big time!

    I'm lucky in that I seem to be tolerating sulpha okay so far - had horrible, horrible headaches while my body got accustomed to the max dose (4 tabs daily) but they seem okay now.

    I do hope you find relief soon. Wishing you luck,

    Lois x
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Donna

    Don't think we've "spoken" so welcome to the forum!

    Just to second what DD has said - doesn't sound as if you are getting much help in the way of drug treatment at the moment which is a shame because there really could be something out there which could give you some relief. Really hope that you are able to talk to your consultant soon about some alternatives sooner rather than later. And if the inflammation can be kept under control by other means, you may not need to take anti-inflamms and sulpha any more.

    Please do keep us update on how you are getting on.

    Love Tillyx
  • whitey44
    whitey44 Member Posts: 36
    edited 30. Nov -1, 00:00
    Hello Donnas

    You are extremely brave :!: :!:

    I am sending you extra special sunny :):) because you have been through so so much for so long :!: :!:

    I truly believe that RA raises its head when we are children but it's very hard to diagnose. As a teenager I suffered dreadfully during the winter months with a swollen left knee. GP put it down to lack of salt in diet. My mother, God rest her soul, (she was so fiesty) never accepted this answer then at the age of seventeen the swelling stopped until Arthur struck when I was age thirty three; that left knee gave me hell for seven years.

    With regards to your hands, perhaps you can try Epsom salts/see OT re moulded splints, if you've not already done so, (as per Caprica's thread) :!: :!:

    As for your feet, Atrhur did not allow me to wear shoes for seven years. I discovered ECCO shoes in year eight; they are the only shoes I can wear without feeling too much pain - great comfort & support :!: :!: Last year I came across HOTTER shoes (extra wide fitting) but have not tried them yet:

    www.Ecco.com
    www.EccoByPost.co.uk/Eccos
    www.Hottershoes.com

    Both CO's deliver free in UK

    Finally,of course you still play the piano (I used to play as a child). Take time to yourself, sit quietly, keeping your eyes open, in your mind's eye, visualize yourself playing the piano; touching every key, hearing every note (you know the rest) :!:

    Always remember Arthur can never take away our wonderful or treasured memories :)

    Pure wishes & love

    Whitey :D:D XX
  • donnas
    donnas Member Posts: 119
    edited 30. Nov -1, 00:00
    Oh you're all so lovely, thank you.

    On top of all my RA stuff I also have depression and today is a hard day. I can only thank you all for your kindness at the moment.

    D xx
  • marion1952
    marion1952 Member Posts: 963
    edited 30. Nov -1, 00:00
    Hello Donnas

    Welcome, but sorry to hear you are not good at the moment..

    I am also not keen on NSAIDs as they gave me a stomach ulcer 2 years ago, some months after I was diagnosed with RA . I won't take them now, even with a 'stomach protector.'

    I am a BIG fan of methotrexate, which I have been on for two and a half years and which I now take by injection. It allowed me to return to work and enjoy life again.

    I agree with DD and the others - I think there are some other drugs (possibly methotrexate) out there that could help you..

    Don't give up on the piano playing.. I thought I would not be able to play my violin again after I developed RA two and a half years ago because my hands were so painful, but after 12 months I took the plunge and starting playing again using my hand splints and although I only play in one little orchestra now (as opposed to 3 orchestral groups before I was diagnosed), I am happy to be part of the 'music scene' again (although have just had another 3 month break from playing because I have recently had a hip replacement!) .

    Please keep posting and let us know how you go on..Hope you feel a bit better over the next week..

    Marion x