MY HUMIRA JOURNEY HAS BEGUN

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scorpio
scorpio Member Posts: 159
edited 28. Dec 2010, 17:16 in Living with Arthritis archive
After reading this thread form stlucia i thought i'd add my tuppence worth:

"Hello everyone,

I am sorry for the lack of posts recently. Life has been pretty rubbish.

I have started on the Humira (one dose so far) and all I can report is absolute and extreme exhaustion!!! Has anyone else had a similar experience? My muscles and joints have been painful as per usual but feeling flu like in addition to RA.

Yuck! Please tell me it gets better!!!"

well, i have had my 2nd dose and i have suffered from fatigue too......my muscles are aching and i have woke up feeling like i have been on an all day drinking bender.........my eyes are sore and i feel very very tired - so much so that i am struggling with the 10 hour shifts at work

all in all though i am happy to be on the correct train, for once

chris

Comments

  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
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    Oh Scorpio I am so sorry you are struggling so much.

    This sounds a bit worrying to me and I do think it would be worth trying to speak to the rheumatology nurse sooner, rather than later, and before you have your next Humira injection.

    Thinking of you.

    Love Tilly xxx
  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
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    Morning scorpio
    Hope you are feeling a little better today.
    I also get days or weeks where it is difficult to stay awake or get motivated, I think it is something we just have to ride out.
    Hope the humira starts working soon and that it gives your joints relief.
    I am not on humira so I can't say how long it takes before you feel the benefit.
    I wish you luck
    Juliepf x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Morning scorpio, I am sorry to hear that the humira is causing you such tiredness etc. I am not surprised that your joints are still hurting, these anti-TNFs do not sort everything out in one go, but I hope it starts to sort something out for you soon and that your body begins to adjust better to it. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmorton
    frogmorton Member Posts: 29,504
    edited 30. Nov -1, 00:00
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    Hi Chris

    I do hope the tiredness is just temporary x:( Sorry to hear you dont feel yourself.

    So difficult to know what is the meds and what is the illness isnt it?

    I hope that very soon it starts to work and you feel way better

    Love

    toni xx
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hi Chris
    I am so sorry you have been struggling, sorry I cant help with the meds, is there anyway you can check with your GP or rheumy just to be on the safe side.
    I wish you well with it, I hope it does settle down and you get lots of relief from it.
    Let us know how you are getting on with it.
    Barbara x
    Love
    Barbara
  • scorpio
    scorpio Member Posts: 159
    edited 30. Nov -1, 00:00
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    :))

    BUT, i am walking and moving.......i have dropped the pred down to 1 tablet a day and that will be going the journey in the next few weeks

    i am tired, but still happy

    i need to give it time
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
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    Someone reported extreme fatigue after starting Humira. I have not taken mine due to a persistent cold for many weeks now and I can feel all my old, familiar pain and stiffness returning plus all the cold symptoms and fatigue. I found Humira brilliant and I am desperate to get back to it.I hope things improve once it is in the system.

    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
  • mp1952
    mp1952 Member Posts: 425
    edited 30. Nov -1, 00:00
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    Hi Scorpio

    I am due to start Humira in the New Year and have been warned that I might experience extreme fatigue when I first start it...

    I think you are doing REALLY well to be doing 10 hour shifts though!

    Do keep in touch.. there are a few of us 'new Humira starters' around at the moment.

    Marion
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    It dawned on me yesterday that probably one of the reasons I have 'coped' so well with the humira (and meth) is that I am comfortably proppped on steroids, have been for a while now. I certainly began to feel much more tired when I was trying to reduce the dose of pred (what the **** was I thinking?) - now having boosted it back to 17.5 mgs per day (yikes) to get me thro Christmas life is far, far better. Shame it won't last but I will enjoy it whilst I can. Good luck with your next dose, scorpio, and keep the pred as low as you can. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
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    Hi Chris,

    Sorry I cannot help much with your new meds but I wanted to wish you well with the next injection and the tiredness eases off a little.

    I take it that you are still working at the old place; I don’t know you are coping with such long shifts though.
    Nice to see you back posting I hope you manage to have a proper brake over the festivities.

    Lv, Ix
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
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    Hello Scorpio

    I was so pleased to read that the Humira has allowed you to reduce the pred and that you are walking and moving! Hope that the tiredness does ease for you so that you can begin to enjoy your new found mobility!

    Love Tilly xxx
  • scorpio
    scorpio Member Posts: 159
    edited 30. Nov -1, 00:00
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    well, i am down to 5mg of pred a day and i am going to reduce that to zero after the new year......injections are easy enough and i am doing it into my thigh which i do prefer (i shudder at the thought of injecting the stomach).......

    i will keep you all updated
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 23. Dec 2010, 04:00
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    You are a bloke, yes? Nice, thin, lean, 6 pack toned tummy? (Well, that's how I see you!) No wonder you shudder: after 3.75 years on pred mine is flab central - simples! I find the thigh difficult, I don't know why, my nurse yesterday said that it would be easier once I am under my own steam, at home with no-one watching. I hope she is right! She too has RA, cheerfully meth stabs people weekly at the clinic but it takes her up to TWO HOURS to find the courage to do hers: go figure! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Colin1
    Colin1 Member Posts: 1,769
    edited 30. Nov -1, 00:00
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    I hope it all turns out well for you and your feeling better soon
    Colin
    c025.gif
    WHEN GOD GIVES YOU LEMONS MAKE LEMONADE
  • stlucia
    stlucia Member Posts: 392
    edited 30. Nov -1, 00:00
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    Ooh my ears are burning! Well....I have had my second injection today. Flipping painful when the juice goes in...

    I'm just having lunch wondering if the tiredness is psychological after last time or I am actually really very tired.

    HAPPY CHRISTMAS! x:rudolf x:rudolf x:rudolf x:rudolf x:rudolf x:rudolf x:rudolf x:rudolf x:rudolf x:rudolf x:rudolf I love these reindeer!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Take a tip from Dr DD - do it at night, then you can crawl into bed and sleep thro the initial whatevers that might happen. I have always done the humira at night, and I shall do the meth that way too. I hope you have a good christmas, stlucia. Take care. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • scorpio
    scorpio Member Posts: 159
    edited 30. Nov -1, 00:00
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    dreamdaisy wrote:
    You are a bloke, yes? Nice, thin, lean, 6 pack toned tummy? (Well, that's how I see you!) No wonder you shudder: after 3.75 years on pred mine is flab central - simples! I find the thigh difficult, I don't know why, my nurse yesterday said that it would be easier once I am under my own steam, at home with no-one watching. I hope she is right! She too has RA, cheerfully meth stabs people weekly at the clinic but it takes her up to TWO HOURS to find the courage to do hers: go figure! DD

    LOL

    i am 5,10 and unfortunately my six pack vanished when the arthritis appeared, whilst walking on the beach on my honeymoon in Barbados..........a wonderful, but pivotal and life changing moment - a painful toe on my right foot - if i knew then what was to come i would have cried for months - within 6 weeks i was pretty much bed ridden as the A engulfed my knee making it impossible to bend

    but, i am a fighter and will not be beaten - i now weigh some 3 stone more than i did 7 years ago, but i can lose the weight......positivity is a mental thing (i just wish it was with me all of the time)

    if i had'nt discovered this place i would not be where i am today

    thank you all
  • Chinup
    Chinup Member Posts: 68
    edited 30. Nov -1, 00:00
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    Hi Scorpio

    I had my second humiru injection last Friday, I took it in the evening and went to bed, as the first one gave me such a bad headache, i must say this time i am feeling so exhausted I can fall a sleep any time of day and feel I have not slept for 24 hrs, also i am noticing a change in my vision, its almost like I need to keep cleaning my glasses, I cant quite describe it, I do hope these are just side effects which will go away in the near future, I do hope the humuria works for you and all others on it, I keep reading dd,s post, She is in so much pain even being on humiru and all other meds, I do feel for her, and all you others, i send you all gentle hugs and wish you all a happy new year.

    Di x
  • scorpio
    scorpio Member Posts: 159
    edited 30. Nov -1, 00:00
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    i am starting tofeel good and i am thinking of coming off the steroids altogether to be honest

    good luck to anyone else on it
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    That's good news, scorpio, I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben