Don't know what to do

gemmapetken Member Posts: 263
edited 4. Jun 2013, 17:47 in Living with Arthritis archive
I was under the impression that today's appointment would be to start cimzia. When I get there they know nothing and "it takes a while to get on biologics you know" so had to fill in the same forms as before and that was it. I saw the doctor four weeks ago and he said with my das score I could go on it. I don't understand why I had to wait four weeks to do nothing and to top it off she couldn't tell me how long it will be after today. I've been waiting for today as I just need something to feel better :(
I think I've been misled but should I contact pals? Or just keep ringing rheumatology saying how badly in pain I am?
Upset at the moment :(


  • toady
    toady Member Posts: 981
    edited 30. Nov -1, 00:00
    Hi, the wait of four weeks is normal, you have to have recorded das scores of above a certain level on 2 occasions one month apart before anti-TNFs caan be prescribed - so that covers that, but I don't know why they have didn't give you a better idea what will happen next.

    I didn't start my treatment instantly after the 2nd appointment, but I was told I would be able to, & when; and wheels were set in motion, so at the least you should be entitled to an idea of where things stand for you. Hope you get some answers.

    ps you said 'he' for your first appointment ie the dr who said you would be able to start cimzia, and 'she' this time so different doctors I assume, can you get hold of/have a word with the first one if he was more help?
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    Hi Gemma

    Not sure about all the ins and outs of your problems at the minute but if you are upset and feel you are getting nowhere fast and no one is saying the same thing, contacting PALS would be a very good idea, for your own sanity.

    I have not used them for myself but in connection with my mum when she was in hospital for a long time. I contacted them twice via email and they were great. The second time was when I could not get a doctor to call me about my mum's health. PALS contacted me by phone and within two days a doctor called me. A wonderful service. I wrote to them after saying so too.

    Elna x
    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.
  • gemmapetken
    gemmapetken Member Posts: 263
    edited 30. Nov -1, 00:00
    Thank you for your replies
    I now fully understand why there is a four week wait, why wasn't I told this?? Also why couldn't she give me a rough timescale. Don't even think she did a DAS score :( as the form I did was only done as the old one was missing from my notes!
    A very long email has gone in to PALS
    Thank you
  • gemmapetken
    gemmapetken Member Posts: 263
    edited 30. Nov -1, 00:00
    No reply from PALS email.
    Really don't know what to do.
    My mum says I should make a nuisance of myself and ring the rhuemy nurse telling them how much pain I'm in!
    Just want to know a ball park figure of how long I will be waiting.
  • stickywicket
    stickywicket Member Posts: 26,270
    edited 30. Nov -1, 00:00
    Why not ring PALS to check if they got your email?
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran