young newbie!

caprica Member Posts: 195
edited 11. Jan 2010, 13:53 in Young people's community
Heya, someone from the main forum advised me to say hi on here.
Im 23, from Scotland and am currently waiting on getting my diagnosis, but it looks like some sort of inflammatory arthritis, maybe RA. It's not too bad just now but obviously I'm pretty shocked/worried about the future, as this came out of nowhere.

Anyone around my age on here, wanting to share their story/ assure me that I can still be a young person and I won't have to abandon my career, stop having a laugh and overnight turn into a granny??? :/


  • scattered
    scattered Member Posts: 326
    edited 30. Nov -1, 00:00

    I'm 22 and was diagnosed when I was 19. I'm in the process of getting my MA - my diagnosis happened in the first 2 weeks of my BA. It is possible to get RA controlled to a point where you can live a relatively normal life, so don't give up on yourself just yet! There are a lot of drugs now and hopefully they will have caught your disease early, preventing crippling joint damage.

    I've had RA for 3 years and have been in 6 month remission once. My RA is quite aggressive and it's taken a long time to find treatments that work for me, but I've been able to finish my first degree and embark on another while dealing with it. Sometimes it limits my social activities as I get tired very easily, but it's just a case of pacing myself properly and weighing up the consequences.

    I hope you get a concrete diagnosis soon and can start treatment. Early treatment seems to be the key.

  • caprica
    caprica Member Posts: 195
    edited 30. Nov -1, 00:00
    Hey Scattered,
    thanks for your reply! and congrats on your degree, it's ace that you didn't give up on it.
    I graduated in 2008 and have been in my first 'proper' job for the past year, they're being really supportive so far so that's good.
    Yeah i've read that about early treatment, my symptoms only came on like.. 5-6 weeks ago, slowly creeping in, some days am totally fine, others i feel like ive been put in another body, mentally just as much as physically. I'm waiting to see rheumy and demand some scary drugs. Not fun to sit around waiting but it's good to have some people to speak to on here in the meantime!
    Sorry to hear you're not in remission anymore. :( what changed? I'm still learning about the disease, so I don't know too much about how remission happens.
  • scattered
    scattered Member Posts: 326
    edited 30. Nov -1, 00:00
    I came out of remission in May last year. I was under a lot of stress and we think it caused a big flare up. For the first time my feet were significantly affected. We tried upping the doses of the medication I was on but that didn't really work. Then the meds caused my white blood cells to disappear, so I had to stop them and start a new medication. It's a case of wait and see now. I'm on Humira, methotrexate injections, hydroxychloroquine and prednisolone for my arthritis, as well as the various painkillers and folic acid. I have been on methotrexate tablets, sulphasalasine, leflunomide and azathioprine. If the current combo doesn't work I'm moving onto infusion meds: rituximab. I achieved my 6 month remission on Humira, azathioprine, hydroxy., and pred. It was wonderful! I also had a brief remission while on leflunomide but it didn't last for long and the drug caused bad side-effects for me.

    Like I said, there are a lot of options as far as drugs go, and more are being created and tested all the time. It is worth persevering with them.

    I hope you feel ok today.
  • cazaline
    cazaline Member Posts: 61
    edited 30. Nov -1, 00:00

    I'm 22, 23 in March, I've had Arthritis since I was 6 years old, currently struggling my way through my final year of uni. Like Scattered, there was a point where I went into remission for a bit, around my teens, think it lasted a year, but have since got progressively worse. I am taking Enbrel which is a self injection twice a week but unfortunately a lot of the joint damage had already been done before I was given this medication. I had a hip replacement on the 10th Dec and waiting for the other to be done in a few months with any luck.

    I can completely understand how difficult this must be for you right now, but rest assured that the medication is improving, it seems like you have caught it quite early so the medication they put you on should prevent any joint damage and help control the pain. It is possible to live a relatively normal life even though you have Arthritis, just make sure you keep on top of your medication and do any exercises that have been advised to you. It will be tough at first, but try and remain positive (easier said than done I know!) Things are going to be difficult, and as Scattered said, you've got to pace yourself otherwise you'll tire yourself out and end may end up in pain. Don't let the Arthur monster take over your life, be strong!

    If you have any questions you're more than welcome to message me.

    All the best!

    Caroline xXx
  • wallysatt
    wallysatt Member Posts: 87
    edited 30. Nov -1, 00:00
    Hi caprice,

    I’m 28 and have had arthritis since I was about 6 too.

    I finished my masters in 2008 and am not working at the moment because I had a knee replacement last May and need my other knee and my hips doing.

    I’m on rituximab infusions, etodolac, leflunamide, parcetamol, tramadol and diazepam along with some stuff for my tummy.

    I drive and have a pretty good life. I do a lot of voluntary work and go to a French class at college. I have a lovely boyfriend who helped me build a great snowman yesterday!!

    If you have any questions feel free to PM me.

  • clairy
    clairy Member Posts: 29
    edited 30. Nov -1, 00:00
    Hey Caprice,

    I'm 21 and also from scotland had arthritis since my teens and i'm a fully qualified mortgage adviosr and get up to the same things all my friends do. Its not always easy, but you'll get there.

    I hope the doctors get to the bottom of it quickly for you.

    If you in scotland you might want to check out Joint Potential its run by arthritis care for young people in scotland website is the weekends are run by youth contacts (i'm one of them) who are all young people with arthritis and its great to get the chance to meet others with arthritis and share experiances and generally have a laugh. Everyone who comes along has arthritis and have been diagnosed at differnet times, so quite recent like yourself and other who have had it since they were children.

    If you need supprt and have any questions then the forums a great place everyone is so helpful.

  • gemmapetken
    gemmapetken Member Posts: 263
    edited 30. Nov -1, 00:00
    im 28 and was diagnosed with RA two years ago now, cant believe its that long ago. It was just as i found my perfect job and started university to train to be a teacher.

    It had taken me ages to find the right job and i was gutted.

    Im fine now, not really sorted yet and am feeling bad in the snow. Just found out i have OA in my hip and a deformed hip aswell.

    Just keep going!!

  • caprica
    caprica Member Posts: 195
    edited 30. Nov -1, 00:00
    Hey thanks for all your messages and encouragement!

    Cazaline and wallysatt - It's great you've found ways to continue your education, especially dealing with this since you were kids. That's mad, before all this happened to me I knew some younger people got arthritis, but never realised children did too. Obviously, due to necessity I've now done a lot of research but it's crazy how little most people know about inflammatory arthritis. I hope this changes soon.

    Yes I am really hoping that early treatment will be effective, it all began 6 weeks ago out of the blue. I'm just annoyed that the NHS takes its sweet time, I went to see the doc like 5 days after symptoms began and have been really proactive with GP but I'm still waiting to get the app with rheumatologist and who knows how long he'll faff about before giving me treatment. My case has been qualified as 'to be seen soon', and apparently 'soon' means before the 30th March. That seems like forever away, I hope my poor joints aren't getting damaged yet. Unfortunately with the NHS a lot of the time it seems that if you're not on death's door, then you have to be very patient.

    yes I read about Joint Potential! I'm really thinking about going, it is quite scary feeling alone, as none of my friends or family know what to say or do at this point. I don't blame them though, I dont know what to say myself. Glad to hear you still do most normal things, gives me hope!

    Ha, I'm so with you there. Im a photographer and videographer and just found a full time job doing that last April. Jobs in media are a pain to get, so I had been feeling well chuffed with myself. "Everything in my life is going right to plan....." Hahahaa. Sigh. Typical. I hope I can continue with it, it's my life. :( Are you working now Gemma?

    Anyway no point thinking bad thoughts. That's my biggest problem at the moment - my brain and the dark places it goes to!!

    Thank you all for the messages I'm sure I'll be asking you lots more questions!
    take it easy,