Life almost without steroids. . .

dreamdaisy
dreamdaisy Member Posts: 31,520
edited 24. Aug 2011, 02:36 in Living with Arthritis archive
. . . . is grim. I am down to 3 mgs per day and ye gods the thin-end-of-the-wedge humira hours are the worst they have ever been: gawd knows why I thought they were rough before :lol: now I know they were the halcyon days of this dross. I am on track to finish these lovely little pills by the end of the year: I have taken all the 5mgs back to the chemist, I only have 2.5 and 1s in the house and as soon as I am down to zero they will go too. It's not fun (life with arthritis rarely is) but I have to get used to this, yes? And I will. DD
Have you got the despatches? No, I always walk like this. Eddie Braben

Comments

  • mig
    mig Member Posts: 7,154
    edited 30. Nov -1, 00:00
    With you all the way daisy,you are so brave.hope you are having a better day than yesterday,missed having you around.Mig
    ps nearly finished one front of crochet cardigan not quite as grubby as the back.
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    You certainly will. I've no doubts at all.

    I seem to remember someone once saying on here that, for the real crunch time, ie below 5, something helps. Can't remember what it was. Think it might have been steroid jabs which I also think never work for you. But, have you ever had them when not on the oral ones? Just a thought.

    Hang on in there. I know you'll do this. Think shiny new knees.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Ah sticky, you know me: gin helps. And wine. And beer. And sheer bloody-mindedness. I won't have any more steroid jabs ever either - off means off. And as for shiny new ones, ye gods there's a helluvaway to go on that front! :grin: Three stones and thirty months. :sad:

    Oh mig, again another giggle - thank you! I am glad to hear that the sterling work continues, well done to you! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    Wow, DD!!!! :shock: I am struggling to maintain 5mg. I can't imagine trying to get beneath it. How are the adrenals coping???
  • ichabod6
    ichabod6 Member Posts: 843
    edited 30. Nov -1, 00:00
    Hello dd,

    I've been reducing steroids since March when I was on 7.5 per
    day. I am now in week three of four at 2.5 per day. This will be
    followed by some weeks at 2.5 on alternate days followed by
    bugger all for ever I hope.
    Shall we proceed hand in hand to zero?
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 23. Aug 2011, 02:30
    Oh suzy, I have no idea. :roll: Maybe they are, maybe they're not, I dunno. I have taken the gunk out of the fridge to warm thro whilst I wash up, then it will done with temper: as my prayer says 'Forgive me my temper as I forgive those who temper against me.' I hope you are as well as you can be, suzygirl. DD

    Ooooooh Ichabod! You have made my day, yes please! :grin:
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • nanasue
    nanasue Member Posts: 465
    edited 30. Nov -1, 00:00
    Hello DD,
    I'm sure if anyone can do it you can. Your ability to deal with this rubbish with humour and wisdom always amazes me, even when you are having a bad time you amuse us with tales of you riding a unicycle. I will be keeping everything crossed for you (joints willing) and hoping you can come through the other side with your humour intact. Thinking of you,

    Sue x
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    I always knew that we had something in common. Gin, wine & beer, of course. Sheer bloodymindedness? Ah, now we’re talking.

    I don’t quite get the ‘no steroids ever again’ approach. I last took oral ones in about 1980 but I’ve had occasions to take the odd jab (mostly bum) since then. Last time about 2 years ago to help after my new knee (and a few weeks without DMARDS).

    3 years to new shiny ones? OK start the countdown.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • jillyb1
    jillyb1 Member Posts: 1,725
    edited 30. Nov -1, 00:00
    DD , full of admiration as always , you've done and are doing so well . Guess it's that the bloodymindedness kicked in and you decided to see it through ! I have no doubt that you will manage equally well with the weight loss . Hang in there , thinking of you . Jillyb
  • mp1952
    mp1952 Member Posts: 425
    edited 30. Nov -1, 00:00
    Well done DD...

    Marion x
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    hang in there DD

    the end is in sight ..... and not just for you and your steroids :wink:

    I haven't posted much lately but I have been reducing too - and it's been a long slow slog down from the 5mg I was taking in November, to the 1mg I have been taking since saturday.

    8 weeks left ..... till October 15th all being well ...... (do you remember I was supposed to be off them by December 15th last year :roll: :lol: ) then never again unless I am absolutely seized up without any other hope! (and I mean really really really seized up!!)

    thinking of you DD, and feeling every step of the way.

    a wonky hug from a wonky wonky ((())))
  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
    DD you are on a roll.. and doing so well, think that is down to your strong willed attitude and determination..
    You are an admiration to many i am sure..
    Keep up the good work..
    Thinking of you..xx
    th_tn_TisFORTIGGER.jpgxxTracyxx
  • tiggernut
    tiggernut Member Posts: 339
    edited 30. Nov -1, 00:00
    Well done DD, I'm trying to cut down as well. I'm on 6mg so a way to go yet.
    Trouble is some days it's hard as I'm sure you will agree.
    Had a bad day yesterday and took 16mg!!
    Take care,
    Anita.
  • nanarose
    nanarose Member Posts: 117
    edited 30. Nov -1, 00:00
    Can I just add a 'well done' to you too DD. :smile:
    I understand from previous posts that you are trying to get off steroids altogether? I'm not on any steroids and I think after reading everyone's posts and doing some research, I never will, although I did have a steroid jab last year and it worked very well for me, so I wouldn't say no to one again.

    You are very determined and I have no doubt that you will be steroid free very soon. Good luck.x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Thank you all for your kind words of encouragement. I have never been one to be unusually perturbed about side-effects (years of swallowing and injecting stuff took care of that ages ago) but once the long-term risk of these things were explained (and with some force by my favourite rheumatology nurse) even I saw sense. Once they are gone they will be gone and gone for good, no matter how rough things become. I have been through worse without them, so as I have done that before I can do it again (and no doubt will). The one thing that this dross does guarantee is that the good times are far and few between with greater or lesser degrees of rubbish being forever present. I would prefer less rubbish to deal with in the future - and no more alendronic acid will be a definite boon. As D-reem might have said 'Thiiiiiiinnngsss might somehow get better, might somehow get better, when I give up the pred . . . .' Yeah, right. I can but hope, yes? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
    DD you are most certainly doing well and I admire your determination. :smile:

    Keep up your good work :wink:

    Thinking of you :grin:

    Love juliepf x
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Hang in there, DD. You're rockin' and you're rollin'. ;) x
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
    Fingers crossed for you Damsel that you reach your goals.... and without mishap. :wink: :!:

    Perhaps you will be better off without them as the medics have suggested...??

    best of luck DD. :grin:

    Iris xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I have to be, dorcas: they are not good things to be used long-term and I reckon that five years this February was long-term enough. We are all aware of their dangers, athough my joints are arthritic I quite enjoy the fact that my bones appear to be in pretty good nick and I would like to keep them that way. I roared with laughter when they stuck me on the alendronic in late 2007 - their reasoning was I wouldn't like the pain of broken bones: like I enjoy this pain already? :roll: Oy veh. New pains I do like, they distract me from the familiar ones! :smile: I am sure that a quick bout of them here and there is fine and that they work and work well as a good short-term thing, but every day for a few years is not a good option for me. Simples. It's tough, tho. Very. :cry: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Yeah but broken ones are worse. My hip broke spontaneously. (Apparently I had a cyst on it which burst & took the hip with it.) Went to bed OK, woke up in strange pain, walked round on it for 3 days until I couldn’t even stand up. As it was only 2 years after the breast cancer they assumed it was bone cancer & left it for a week’s worth of scans etc. All I remember of that morphine-hazed week was the dishy young chaplain visiting and me having to say to him “I’m sorry. I have to keep my eyes shut. If I look at you I think I’ll throw up.” (I never was good on chat-up lines.)

    Hey, you’re doing the right thing, DD, and you’re doing it well. Keep at it.

    (I hereby pronounce you runaway(!) winner of the most stunning skeleton competion.)
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi DD,

    Sorry i am really late... Tardy as hell eh?!

    Its takes time for your body to remember it has to make the compound that its not had to make (can;t remember the name but its something your body does and why getting of the preds is so slow) Anyway it will pick up the slack and you will feel a lot better as it remembers how to do it.

    You have done so well to knock them back this far so big congrats to you for hanging in there and doing it!

    You are gong to be ok your body just takes a bit of time remembering how to make it its elf. hang in there and a huge well done. A giant kick of the hug bucket and you will do it. Cris xx
  • frogmorton
    frogmorton Member Posts: 30,026
    edited 30. Nov -1, 00:00
    [Its takes time for your body to remember it has to make the compound that its not had to make (can;t remember the name but its something your body does and why getting of the preds is so slow) Anyway it will pick up the slack and you will feel a lot better as it remembers how to do it.

    Well there you go Cris l hadn't thought of that!!!

    DD you will do it....you have to do it and l for one am proud of you :smile:

    Love and hugs

    Toni xx

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