Heyy im new here and not 100% sure what im doing ...

sophiiee
sophiiee Member Posts: 8
edited 25. Mar 2009, 15:27 in Young people's community
Heyyy Im new here and im not exactly sure how everything works so... Lol
Im 16 years old and was diagnosed with Psoriatic arthritis at 14. ( but now thre not sure if i have more than one or not.. )
im currently on 20mg methorexate injections, Folic acid and Volertol tablets.
Tbh im finding it really hard to cope with my injections at the moment, i hate havnt them but didnt mind if they were going to work, thought it would be worth it. ive been on methotrexate a year now and i dont feels its helped at all and i dont think its going to either. Its all starting to get me down.
I have the hospital next month and am hoping i can take a new route.
has anyone get any advice or suggestionss? :roll:

Comments

  • lindah
    lindah Member Posts: 445
    edited 30. Nov -1, 00:00
    Hi and welcome to the site. I am sorry I cannot answer any of your problems but want to reassure you that someone will be along who can relate to you.
    I am one of the wrinklies from the other forums mostly chit chat but its great being in touch with fellow sufferers who know what pain and feelings in general we all have.
    Keep as cheerful as you can cos stress makes it worse.(easier said than done I know)
    Linda :lol:
  • sophiiee
    sophiiee Member Posts: 8
    edited 30. Nov -1, 00:00
    lindah wrote:
    Hi and welcome to the site. I am sorry I cannot answer any of your problems but want to reassure you that someone will be along who can relate to you.
    I am one of the wrinklies from the other forums mostly chit chat but its great being in touch with fellow sufferers who know what pain and feelings in general we all have.
    Keep as cheerful as you can cos stress makes it worse.(easier said than done I know)
    Linda :lol:

    Thank you Linda :)
    I agree it is nice to talk to other people (even if it is one of the wrinklies :wink::lol: ) because its hard for others to truley understand no matter how hard they try..
    Yeaa im trying. making jokes out of myself is always fun :lol: And its great having such amazing friends and family to help you along :)
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    Hi there

    I am sorry to hear that you are not feeling brilliant at the mo. It is also a shame that others your age have not come forward to welcome you. Sometimes this forum is buzzing but unfortunately it has not been lately!

    If it would help, why not give the helpline a call and have a chat with one of them. They are a fantastic bunch and everyone on here has nothing but praise for them. The telephone number is at the top right hand corner.

    Have you a rheumy nurse you could call perhaps. Next month is a long time to wait for your hospital appt if you are not feeling at all great about things at the mo.

    I wish you well,

    Luv
    Elna (another oldie) 8) :lol::lol:
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • skezier
    skezier Member Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi, I'm yet another decrepit I'm afraid but just wanted to say Hi and I hope things get easier for you soon. I only have OA so can't help you with your question but I do hope they gets you sorted soon. When you go for your hospital appointment make your self a list (I know lists are for uncool people! :lol: ) and run through all your questions and fears with your consultant or Rumo nurse. Good luck Flower, Take care Cris x
  • mistywillow
    mistywillow Member Posts: 711
    edited 30. Nov -1, 00:00
    skezier wrote:
    Hi, I'm yet another decrepit I'm afraid but just wanted to say Hi and I hope things get easier for you soon. I only have OA so can't help you with your question but I do hope they gets you sorted soon. When you go for your hospital appointment make your self a list (I know lists are for uncool people! :lol: ) and run through all your questions and fears with your consultant or Rumo nurse. Good luck Flower, Take care Cris x

    Hi sophilee
    Another wrinkly, ( i am sure there are some young bright things on the site!) Just to say hang on in there, these things do take time to sort out. In the meantime this site has been really helpful to me, i only joined recently but it is just knowing that there are other people out there who feel like you do. Hope it helps you too.
    Take care of yourself
    Gill
  • sophiiee
    sophiiee Member Posts: 8
    edited 30. Nov -1, 00:00
    elnafinn wrote:
    Hi there

    I am sorry to hear that you are not feeling brilliant at the mo. It is also a shame that others your age have not come forward to welcome you. Sometimes this forum is buzzing but unfortunately it has not been lately!

    If it would help, why not give the helpline a call and have a chat with one of them. They are a fantastic bunch and everyone on here has nothing but praise for them. The telephone number is at the top right hand corner.

    Have you a rheumy nurse you could call perhaps. Next month is a long time to wait for your hospital appt if you are not feeling at all great about things at the mo.

    I wish you well,

    Luv
    Elna (another oldie) 8) :lol::lol:

    Yeaa i think i may have to phone the rheumy nurse because at one point i felt like i was going to the hospital alll the time. i still do ... but this time has felt like a lot longer time to wait. spose its cos i actualy really need it at the moment! :lol: its been a long week. Lol. Going to phone her monday i think. (shes on holiday atm i think cos i spoke to her secretary)
    Thank you Elna.
    Hope all okay (:
    Love Sophiee
  • sophiiee
    sophiiee Member Posts: 8
    edited 30. Nov -1, 00:00
    skezier wrote:
    Hi, I'm yet another decrepit I'm afraid but just wanted to say Hi and I hope things get easier for you soon. I only have OA so can't help you with your question but I do hope they gets you sorted soon. When you go for your hospital appointment make your self a list (I know lists are for uncool people! :lol: ) and run through all your questions and fears with your consultant or Rumo nurse. Good luck Flower, Take care Cris x

    Heyy
    Yeaa i think that may be a good idea though because whenever i get to my appointment i seem to forget my questions for some reason.. :lol:
    Thank you Cris
    Take Care x
  • sophiiee
    sophiiee Member Posts: 8
    edited 30. Nov -1, 00:00
    Hi sophilee
    Another wrinkly, ( i am sure there are some young bright things on the site!) Just to say hang on in there, these things do take time to sort out. In the meantime this site has been really helpful to me, i only joined recently but it is just knowing that there are other people out there who feel like you do. Hope it helps you too.
    Take care of yourself
    Gill[/quote]

    Heyyyy
    wow a site full of wrinklies :shock: :lol:
    What a lovely help they are though. thank you (:
    Yeaa it is nice knowing people are out there. i went to a youth group last weekend which wasa good aswell. hopefuly going sailing with them all next month :)
    Take Care x
  • scattered
    scattered Member Posts: 326
    edited 30. Nov -1, 00:00
    Hi Sophie,

    Just thought I'd let you know we're not all wrinklies... 21 isn't old, is it?!

    Anyway, I was diagnosed with RA at 19, been living with it since I was 18, maybe a bit younger, so I get the difficulties of school etc.

    It sounds like you need to be one some new drugs. Have you tried any other DMARDs, or DMARD combinations? As you're still a youngster you should have easier access to Anti-TNF treatments. They are injections too I'm afraid, but I've found my Anti-TNF (Humira) plus two DMARDs (Hydroxychloroquine and azathioprine) have really hit my RA hard and I'm doing really well at the moment.

    Good luck.

    Scat.
  • alana772
    alana772 Member Posts: 1
    edited 30. Nov -1, 00:00
    Hi sophie,

    Im 20 and was diagnosed with rheumatoid arthritis when i was 18, but had suffered with the sypmtoms for a while before being diagnosed due to the poor diagnosis skills at my local hospital and GP surgery.

    I am currently on many drugs including Salazopyrin, Naproxen, Predisolone, Folic acid and Methotrexate injections, of which the dosage is being increased every two weeks. I am not noticing much difference since i have started the Methotrexate injections. My consultant has mentioned the anti - TNF treatment and i think i will ask to be moved onto this as a final treatment as i am becoming fed up with all these changes. I know its not nice to suffer from this sort of illness at such a young age but please dont get yourself down. I try to live a 'normal life' and am in my second year of trainng to be a nurse. So it cant all be bad! If you want a moan dont hesitate to drop a line on here, im sure all of us will be ready to offer suggestions etc!
    Hope everything starts to look up for you.

    Alana x
  • colinone
    colinone Member Posts: 1,406
    edited 30. Nov -1, 00:00
    Hi Sophie
    On Wednesday 8th April we are going to try and set a new record for most people being online at the same time on this site. I think the time is set for 6pm if you can join us please let BADGER know. If you cant locate him have a look on CHIT CHAT FORUM under are we going to break the record. We need your help to do this so please join us.
    Colin
  • clare_l_allen
    clare_l_allen Member Posts: 10
    edited 30. Nov -1, 00:00
    Hi Sophie,

    Sorry to hear you're not having a very good time at the moment. I just turned 21- which is definatly not old! but was diagnosed at 13.

    I took methotrexate until i was 17 when i was put on an anti-TNF drug called Enbrel which really helps. It's still an injection but the needle is much smaller than the one for methotrexate.

    If it makes you feel any better, i used to have to mix the powder and liquid to make up my own methotrexate injections when i was about 14, before the pre-filled syringes came in so believe me things are getting easier!

    I really would agree with the others on this topic that you probably need to look into changing your drug regime, i know all the appointments are awful and just shove it all in your face when all you want to do is forget about it but as soon as you get on a drug regime that works you can get on with your life.

    Clare.
    Clare.
    About me:
    I'm nearly 23 and have had RA since I was 13. I take Enbrel and Methotrexate.
    I volunteer for Arthritis Care's Young People's Project in the South of England.
    I like cafes, coffee and cake.