I can't go on...

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Comments

  • stlucia
    stlucia Member Posts: 392
    edited 30. Nov -1, 00:00
    Hi Iris,

    Yes I will most definitely stick with my hubby! He's a great skivvy!!!! I just wish I could do lots more for him rather than him having to look after me all the time.

    How was your day?

    x
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    Hi St Lucia,

    As I have said when I got my Humira 3 of us started, one had no improvement, one was doing well and I was feeling great (after I had got to a point where I was going downhill and no meds were helping).
    Please just see how it goes and if it doesn't work you can try another anti TNF and hope that is more suitable.

    It is so hard to know what to say. Should you get peoples hopes up as it has been so effective or should you play it down just in case it doesn't work for them?at the same time I do want to give people hope. I find it a difficult position to be in at times.

    I have been in terrible pain in the past so I do know how you feel and it is an awful place to be in. Sometimes you feel that living in so much pain all the time, even when trying to sleep is just too much to cope with.

    I am just going to hope that you get some relief from all this soon..
    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
  • stlucia
    stlucia Member Posts: 392
    edited 30. Nov -1, 00:00

    Thank you Elizabeth for such a helpful post. Does the effect you experience depend on how severe your RA is I wonder?

    I am trying to keep my feet on the ground and only be a little bit excited about starting.

    How do you find doing the injections? I would really like to hear more about it as I really know nothing about anti TNFs practically.

    Hope you are doing ok today,

    x
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    Well 2 years ago I could barely move. My MTX was 22.5mg. I shuffled along the road like an old lady so at that point they decided to try Humira. I wasn't excited at all as everything else had failed so I felt this would too, or would only give me a tiny relief from the pain.For me it worked out great and I was unprepared for this. Maybe the staff didn't want to get my hopes up either but I remember thinking I have suffered so much for years why didn't I get given this sooner.
    I did then have a badly damaged hip so wasn't totally pain free but bits of me were pain free ( the swollen bitsI think)for the first time in years especially my wrist, shoulder and both knees.I slept better and could do more.
    I know where you are at and it is a massive struggle to keep doing your job. You must be so tired of it all as I was.I think it is only that I had to keep going that I did.....

    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
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    They won give you anti TNF's unless you are severe and other meds aren't working.
    I am fine with the injections now. Let the nurse do the first few so you can concerntrate on getting better. I still panic with Methotrexate though.

    Elizabeth x
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • stlucia
    stlucia Member Posts: 392
    edited 30. Nov -1, 00:00
    Thanks loads Elizabeth. Why do you panic about the Mtx? I've been on it over a decade now. I get to hear all about the options for anti TNFs this coming week so I will let you know which one I choose. I am so relieved to have been accepted.

    I used my blue badge today and it was great as I got loads of money off my parking cost too! Hubby was over the moon!!

    x

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