Newbie

jayney44
jayney44 Member Posts: 20
edited 23. Nov 2011, 09:03 in Living with Arthritis archive
Hi. I'm new to all this and am not sure whether I'm doing this right or not???

I have PA which was diagnosed in March. I was given the choice of going onto a drug trial or going down the conventional drug route. I opted for the drug trial as the side effects seemed less severe than the alternative. I tried this for 6 months but came to the conclusion it wasn't really having the desired effect. So I came off that and went down the conventional route.

I have been now prescribed leflunomide, naproxen and lansoprazole. I have also been on methotrexate for 3 years now and folic acid too.

I am never free from pain. I have PA in most joints except my hips at the moment. Its even in my jaw which I find astonishing as I didn't think you could get it there!!! :shock:

I'm struggling so much to get my head round all this and don't know what to do.

Sorry for moaning on, thats all I feel I do. Any advice would be really appreciated.

Many thanks.

xx

Comments

  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    hi welcome to the forum did you know for sure they were giving you the drug in the trial??? thought they did some with out to show wether it works but have never been on one so do not know i hope the meds kick in soon the pain not good is it i have only got as far as inflimation artheritis will find out which one day lol val
    val
  • jayney44
    jayney44 Member Posts: 20
    edited 30. Nov -1, 00:00
    Hi Valval.

    Yes, I was definately on the trial drug as i had extensive psoriasis before i started the trial. One of the side effects, all be it a positive one, is that it helps the skin. My skin became free of psoriasis within a coulple of months. On talking to the staff on the unit, they felt sure I was on the trial drug and not a placebo.

    I don't know what to expect from this disease process? I'm so tired too is that normal?

    Sorry for whining. xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's good to meet you but as I'm not having a good time at the moment I will be brief: tiredness is absolutely normal, our bodies are fighting themselves and naturally tiredness results. I am fifteen years into PA (despite not having much of the P bit of the whole business) and I have tried a few drug treatments. My PA will be different to yours (as it is different to others') but we all 'get' the pain and frustration: let's face it, any form of arthritis is demoralising, distressing and it can (and does) push us to our limits - and every now and again, beyond them. It's a learning curve of the oddest (and unkindest) kind. Talk to us, we know what is like, we do understand. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    as dd says the exhaustion is awfull but you do learn to balance things a little does not help when you go into a flare but you do the best you can it is not all doom and gloom but when bad might feel that way we are here to suport you any way we can i back at rhummy in dec also docs and got blood tests tomorrow i sometimes wish we could cut these appointments down as they take so much energy and i work afternoons only 4 hours but it is enough normally i have a nap before going in if it a bad day but will not get chance so will be interesting afternoon val
    val
  • SheilaD
    SheilaD Member Posts: 201
    edited 30. Nov -1, 00:00
    Hi welcome to the forum. I have just been diagnosed today with RA. Don't know much about anything as yet, but am learning from other people on here. They are a good crowd and I am sure someone will point you in the right direction.

    Love n hugs
    SheilaD xx
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Hi Janey, Welcome to the forum! You are welcome to rant when you want we are like one big ear when you want to rant and one big shoulder when you need to just talk when your down!
  • CJHunter
    CJHunter Member Posts: 1,038
    edited 30. Nov -1, 00:00
    Hi Janey, and welcome to the forum.
    Hope you find the gang as supportive as i have.

    Take care xx
    Clare xxeyeore-1.jpg
  • jayney44
    jayney44 Member Posts: 20
    edited 30. Nov -1, 00:00
    Thank you all for your advice and support.

    DD - Hope you're feeling a little brighter soon. Gentle hugs. xx

    Valval - Hope yr drs appts go well for you. I do try and rest as much as I can but feel lazy. I've also got a 4 year old who has far too much energy. Am off to see my rheumy tomorrow as I rang up to see if I could be seen earlier. They were talking about a steroid injection so will have to see.

    Take care all and thanks so much.

    Don't feel so alone now.

    xx

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