Permission to crawl under a rock and stay there until...

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stlucia
stlucia Member Posts: 392
edited 31. Jan 2011, 09:07 in Living with Arthritis archive
...the Humira starts to work....4th injection had this week and still nothing...and having a big flare up sob sob ow ow and more ow....

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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Permission granted. There is nothing quite like the exquisite disppointment of a TNF not working, despite the hype. You are in the fourth month, yes? What are your bloods showing? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stlucia
    stlucia Member Posts: 392
    edited 30. Nov -1, 00:00
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    2nd month... and just spoken to the most idiotic, frustratingly stupid OT that ever existed...ok that's quite mean...hmm anyway he had this ability to anger me so much that I could cry. He hasn't done my referral to the Community OTs, tells me I can't have finger splints and says there is nothing wrong with my fingers.....so I asked the same thing to my most amazing physio who is seriously qualified and very high up and she said she didn't even need a closer look at my fingers, she could see how much deviation there was and how swollen they looked. He is a totally nut case and I keep coming across him. Aaaaaaaaaaaaaaaah
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Sorry - I confused the number of injections with months - my apologies. I have no experience of splints etc so cannot help with that. Have the bloods shown anything yet? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stlucia
    stlucia Member Posts: 392
    edited 30. Nov -1, 00:00
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    Yes there has been a huge difference in my bloods....wait for it.....my inflammation markers have more than doubled!! That wasn't ment to happen!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Absolutely right, it doesn't - what did they double to? Have you spoken to your rheumatologist about that? Although I have continued to flare whilst on humira, my inflammation markers have not gone above 5 since July 09. This doesn't sound right, stlucia, not at all. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
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    Aww ok and I may join you. Shall I bring chocolate? I agree with DD, sounds like you need a chat with your rheumy. I'm no expert but it doesn't sound like humira is working for you.

    Take good care and gentle hugs. xx
  • mp1952
    mp1952 Member Posts: 425
    edited 30. Nov -1, 00:00
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    Hi stlucia

    Sorry to hear that you are struggling, and having to deal with an idiot who needs his eyes tested!!

    I bumped into someone recently who is on Humira and it took a good 6 months for it to work for her - but once it started working she found it made a big big difference to her RA.. I do hope it starts to work for you.

    (I am due to start it next month)..

    Marion x
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
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    I am sorry St Lucia. How upsetting and frustrating for you. I expect the team will persevere a little bit longer to see if it starts to help you. I was told if I showed no sign of improvement after 3 months they would quickly swap me onto enbrel.

    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
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
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    Hi St. Lucia, sorry to hear things are tough for you right now. Agree with the others you should contact your rheumy. Maybe get a steroid shot.......?

    Take care and have some of that Green & Blacks.
    xx
  • jillyb1
    jillyb1 Member Posts: 1,725
    edited 30. Nov -1, 00:00
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    Hi , StLucia , hope you've managed to emerge from under your carefully situated rock . Feel better soon . Jillyb
  • stlucia
    stlucia Member Posts: 392
    edited 30. Nov -1, 00:00
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    Don't worry, I checked under the rock for unsavouries....none at all. Just a nice supply of hot water bottles, sleep and Green and Blacks!

    I'm just so thankful for your kind messages. I hope you are all doing ok at the moment.

    I am just reading about cytokines and their role in RA. It's quite interesting. Has anyone come across this before?

    Lucia xx
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hi stlucia
    I am so sorry to hear you are struggling with the pain, its not fair to leave you like this, please try and get an emergency appointment with your Rheumy
    I do hope you get some help very soon.
    Sending you some hugs to be going on with (((((()))))
    Love
    Barbara x
    Love
    Barbara
  • stlucia
    stlucia Member Posts: 392
    edited 30. Nov -1, 00:00
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    Hi Barbara,

    Thank you for your message. I'm ok, it's just a bad flare up again. I'm seeing the OTs next week so we shall see what happens then...thank goodness I won't be seeing that terrible OT again!

    x
  • chris7
    chris7 Bots Posts: 2,696
    edited 30. Nov -1, 00:00
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    Hi stlucia

    Sorry to hear you felt you had to resort to the hiding under a rock!. I hope you can soon emerge and leave the bad flare under there. Just wanted to leave a few hugs and hope you feel a bit better soon. ((( )))
    Chris
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
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    Hi Stlucia,
    I am sorry that the flare is continuing for you. Oh I do hope the appointment goes well this time with the OT. You don’t need all this hassle.
    Could you get something to help you through until the Humira finally starts to work?

    Thank goodness for chocolate.
    Lv, Ix
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Afternoon, stlucia, I hope things have eased a little for you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stlucia
    stlucia Member Posts: 392
    edited 30. Nov -1, 00:00
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    Hello all, I've been awake since silly o clock in awful pain. id love to wake up and not have pain! I think I might have to go to work and leave my joints at home today. oh for the option! I'm feeling just so fragile at the moment emotionally that it is getting harder to cope with this all. anyone got any bright ideas? I see the OT this week, rheum nurse practictioner in a few weeks and the consultant end of march. to be honest they would probably want to do the whole 3 months on humira before deciding so I'm not sure trying to get an earlier appointment would help....and I've not had a steroid injection that has done anything at all yet! x
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi Stlucia,

    oh flower I so wish you could wake and not be in pain as well! I am also a rock dweller just now so move over and we can hide together...... I got a huge bit of granite to hide under and there's room for you as well.

    Sending you a ((((( ))))) and a hope we both get through the day in tack. Will check up on you later and just know you not alone and this lot are always here for you. another ((( ))) The other rock dweller :wink: xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I know they say three months is the optimum amount of time, but the fact that your inflammation markers are heading in the wrong direction might be sufficient grounds for you to contact them and double check that they are happy about this. I hope the OT can magic something up to help, find out if you can see someone from your rheumatology unit earlier than planned, and perhaps go and see your GP about the emotional side of things. Those in charge of your care need to know that things are not going well, surely, this is all part and parcel of the arthritis. It does place an enormous strain on our emotional reserves. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stlucia
    stlucia Member Posts: 392
    edited 30. Nov -1, 00:00
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    Hi Skezier,

    Thanks very much for the invite - just scuttling over to your rock now. Do you have the kettle on? I'll bring the paracetamol and codiene (neither of which are even touching the pain bah!)

    Know that you aren't alone too. Have you got plans to change your meds anytime soon or are you just riding this hideous time out?

    xxxx
    skezier wrote:
    Hi Stlucia,

    oh flower I so wish you could wake and not be in pain as well! I am also a rock dweller just now so move over and we can hide together...... I got a huge bit of granite to hide under and there's room for you as well.

    Sending you a ((((( ))))) and a hope we both get through the day in tack. Will check up on you later and just know you not alone and this lot are always here for you. another ((( ))) The other rock dweller :wink: xx
  • stlucia
    stlucia Member Posts: 392
    edited 30. Nov -1, 00:00
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    Hi DD,

    I'm wondering in hindsight if my markers where up because I had a blood test around the time I had tonsillitis? Does that fit with the picture?
    I am seeing my GP about all this emotionally malarkey this week so hopefully they can suggest something. I might just need permission to give myself a break!

    Thank you so much for the pragmatic encouragement!

    x
    dreamdaisy wrote:
    I know they say three months is the optimum amount of time, but the fact that your inflammation markers are heading in the wrong direction might be sufficient grounds for you to contact them and double check that they are happy about this. I hope the OT can magic something up to help, find out if you can see someone from your rheumatology unit earlier than planned, and perhaps go and see your GP about the emotional side of things. Those in charge of your care need to know that things are not going well, surely, this is all part and parcel of the arthritis. It does place an enormous strain on our emotional reserves. DD
  • seamonkey
    seamonkey Member Posts: 323
    edited 30. Nov -1, 00:00
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    Hi stlucia,
    Ah your words rang true with me. Oh what it would be like to wake with no pain! I am sorry your having a bad flare at the moment. Perhaps taking a bit of time off would enable you to regain some emotional strength to carry on at work? I hope you have no more dealings with the OT who upset you so much. Isnt it odd how people with the same training can see such different things.
    Hope you are having a bit of a better day today and have managed to put your rock to oneside and get some fresh air. :smile:
    Best wishes
    seamoney
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