I cried!

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kerrycc
kerrycc Member Posts: 89
edited 25. May 2010, 12:16 in Living with Arthritis archive
I went for my appointment on Friday expecting to hear news of whether I qualified for anti TNF treatment, as the nurse said she was sending a letter requesting this for me, 3 weeks ago. I got to my app to be told that they hadn't even sent my letter off yet as they were waiting for some other results! I can't tell you how disappointed I was. If I'd have been told in the first place that they couldn't write yet, I wouldn't have got my hopes up for Friday! Plus.... I had mentioned before that I could no longer stomach the mtx and had tried several different ways of taking it, she just kept on nodding and making sympathetic sounds!! I just sat and cried! (that's far too many !!'s now) I had to say to her, her suggestion of trying the injection and I still had to push :x Anyway, I was too upset to speak and I now have an app tomorrow for a mtx injection, but am unsure if this is a lesson in how to do it myself, or whether they will just simply give me an injection :x I'll see what tomorrow brings.... :roll: xx

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  • kathbee
    kathbee Member Posts: 934
    edited 30. Nov -1, 00:00
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    So sorry to hear about that Kerry

    I had some tests a couple of weeks ago with
    a view to going onto Anti-tnf treatment, they did
    have to send some of the blood testing they did
    away for the ANA result and it takes a couple of
    weeks so I was told.

    But luckily for me they have prescribed Humira without
    that part of the tests coming back and showed
    me how to do the injection (every two weeks).

    But for them not to have sent out the letter is really
    really bad.

    I hope you get some much better help and advice
    very very soon. Just not good enough is it.

    Kath
  • marion1952
    marion1952 Member Posts: 963
    edited 30. Nov -1, 00:00
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    Dear Kerry

    So very sorry to hear about your disappointment on Friday. No wonder you cried.

    I had mTx injections in my bottom for about 12 months (I used to go to the hospital every week for them) and then I decided to have a go at self injecting in my stomach and I have found that much better - much less hassle than driving to the hospital every week.

    I'm not the expert on anti-tnfs but I think they are self -injecting too - so would it be worth getting the hang of self-injecting so that when approval comes through you are ready to start the new drug?? Just a thought ..

    Can anyone go with you tomorrow to ask some questions for you if necessary? or perhaps you could tell the nurse that you will phone her next week to find out where things are up to with the letter...

    Hope you are feeling less fed up soon.

    from Marion x
  • frogmorton
    frogmorton Member Posts: 29,447
    edited 30. Nov -1, 00:00
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    Oh Kerry :(

    You poor thing :(

    I think you have a right to feel let down when you thought there was hope :roll:

    I agree with whoever(sorry no braincells left), suggetsted if you can you atke someone with you tomorrow.

    Love

    and hugs

    Toni xx
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Kerry
    You poor thing no wonder you where annoyed, hopefully they will have posted it by now, like toni says try and take someone with you.
    I do hope you get it very soon.
    Lots of love
    Barbara xx
    Love
    Barbara
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
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    Yes they do make you wait. first the appointments for the various tests, then the results and then they write to request it and then wait for the actual delivery of the injections to be set up.I waited at least 4 months.
    Elizabeth
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
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    Hi Kerry,

    you poor thing - you must have been so disappointed. They should have explained the whole process to you properly. To save this happening again, make sure you ask detailed questions so nothing is left to chance.

    Speedalong
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • kerrycc
    kerrycc Member Posts: 89
    edited 30. Nov -1, 00:00
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    Thanks for your thoughts and suggestions everyone. I went today and was given the mtx injection, it was by another nurse so I asked what happens from here? He said that he would give it to me for the next 3 weeks to make sure that it suits me, then he would show me how to do it so that I don't have to go up to the hospital every week so that would be better. Also, I shoud hear about the anti tnf's in the next couple of weeks (fingers crossed) so if I can get the treatment, I will be self injecting both! hopefully xx
  • kathbee
    kathbee Member Posts: 934
    edited 30. Nov -1, 00:00
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    Everything crossed for you Kerry.

    Love Kath
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
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    Hi Kerry

    I am so pleased that you are a much happier bunny today. Funny how much difference a day or two can make, doesn't it? I hope that letter arrives very soon.

    Luv
    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.
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