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I need a boot up the Harris.

dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
edited 6. May 2011, 06:42 in Living with Arthritis archive
Sort me out you lot, in your own inimitable way, please. The steroid reduction plan has ground to a halt and, due to an error on Wednesday I ended up taking 15mg yesterday AND LOVED IT. I felt better, more able to manage, more able to cope and am now seriously considering abandoning this utterly ridiculous idea of depriving myself of the ONLY FLAMING MEDS THAT HELP. Are steroids bad for OA? Haven't got a clue. Do they help PA? No idea. DO they help psychologically? You betcha. Do I care about the future state of my bones etc? ABSOLUTELY NOT. They are hardly brilliant now, what's a little more pain between friends?

I swear my blasted knees have hurt more since I saw those blasted Xrays. Mind you all the extra stairs are not helping at the moment, neither is all the extra work involved with Easter and now I have face the prospect of sorting out our house to get it on the market. I am gradually getting to grips with the reality of having two kinds of arthritis, of different causes and different treatments (though, let's face it, you all know I have never been that enamoured of any 'treatments' I have had as any benefits have been ridiculously small). On the plus side, once I have been seen by orthopaedics there is a good chance of some surgery which means GA and I love GA, probably more than I love oral steroids.

I am comforting myself with the thought that things ALWAYS get worse before they improve so I have to do the rubbish first to get the good stuff, the good stuff being, in this case, either a bungalow or a house with stairs that suit a stair lift. Oh and a garage could be helpful for storing a scooter, should one be required. A letter from orthopaedics would also help: I will give them a month then I shall start chasing. There should be enough working days between 19 April and 19 May for someone to get their Harrris in gear and write to me. Oh who am I kidding? :smile: Thanks for reading this. A rather dis-spirited DD.
Have you got the despatches? No, I always walk like this. Eddie Braben
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Comments

  • scorpioscorpio Posts: 159
    edited 30. Nov -1, 00:00
    DD, you are not silly in providing yourself with a comfort rug (in your case the red devils)...........the pred is great for relief, and if you are suffering, i see no harm whatsoever; just remember why you decided to ween yourself off them in the 1st place - the weight gain being one of the main reasons

    good luck in whichever path you choose hun

    best regards, as always

    chris
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Oh I don't care about the weight gain, I am too old to be vain - it's the long-term effects that briefly (and stupidly) ruffled me, but now I no longer care that much. Steroids thin the tissues - but not selectively, so the tissues of the heart, lungs and muscles for example become more fragile. Your bones can begin to resemble Honiton lace but - and believe you me it's a very big but - you damn well feel 'better' - and that is one helluva lovely feeling - as you are finding out! I have been inhaling steroids for years so the steady top-up with the tablets ain't helpful, but I like feeling better. I am tired of coping with moderately grotty. So very tired. I cannot help but feel that life should be better than it is, but that seems to be another boat that I have missed. Never mind. It doesn't matter. Thanks scorpio - keep well, please.
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • valvalvalval Posts: 15,897
    edited 30. Nov -1, 00:00
    to be honest do not know what to say for the best, who wants to stop something that helping.
    going into flare now so can understand why some one would wish to stop one.
    skipped hospital yesterday will only do afternoon today as it just to much and that makes me frustrated
    so i just want you to know am here for you even if no experiance of steroids so can not give any advice it your life and your pain only you trully knows how bad and how long you need something hugs as always val
    val
  • constableconstable Posts: 2,115
    edited 30. Nov -1, 00:00
    Oh DD, I cant sort you out but I can agree with Chris, if it helps you why not take those tabs. Dont worry about any weight gain, all that type of thing can be sorted out along the line.

    And you are looking to move house, everything going on at once for you isn't it. That in it self must be putting on a lot of strain on you. Just try and take one thing at a time. My thoughts are with you.

    Karen xx
    Karen xx
  • skezierskezier Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi DD,

    Well the real good stuff would be 2 tkr's and your movement back with little or no knee pain... that's the real good stuff flower and don't forget that's very likely either.

    I think when you do see the ortho's it might be worth getting some of the other joints looked at by them to see if some of them are also oa as the meds you have been taking wouldn't have done much if anything for oa. You never know this oa thing might be a good thing against what you have been through....,Its another way of looking at it eh?

    I was lucky though when they told me I had a second I was relived cus I knew it wasn't oa and was one of the inflammatories. When they tried to tell me about the 3rd thing I told them not to :wink:

    With \ bit of luck they wont keep you waiting too long and you will be on the list for one or both knees cus think what a difference that would make to your life DD I mean a huge difference for you.

    Not sure how effective preds are for oa..... they can be used but its normally not the first choice of things. You need better pain meds and better anti inflammatories for the oa possibly and maybe that's also will get sorted by the othro's, if they are any good they will.

    Hang in there and with luck they will be in touch soon. I think more likely 6 weeks though here it would be longer but you never know. Hope your ok in your self though? (((( )))) and a hope Cris xx

    Hey this is a kick up the back end but I do also undersatnd how hard it is to have another one.
    g045.gifg045.gifg045.gif
  • madwestiemadwestie Posts: 383
    edited 30. Nov -1, 00:00
    DD i am sorry to hear that you have to cope with OA as well, i hope you don't have to wait too long to see the ortho.
    It is a real dilema more steriod happy and better for you not so for the bones or less steriods and not so happy you and well as for the bones who knows.
    I have steriod injection and was having 4 a year til the rheumy cut them down to 3 i was really peeved about it and am going to see if i can get the nurse to up them again. i knwo the risks and for me it is work taking.
    So it is really a case of weighing up the risks and benefits and deciding or possibly upping them slightly until you see the ortho and know what they are going to do for you knees. it is hard to fight both at the same time.
    I do hope the house sale goes quickly and you find a lovely bungalow.

    so no kick from me, you have enough to put up with.

    Tracey
  • tillytoptillytop Posts: 3,460
    edited 30. Nov -1, 00:00
    Hey DD!

    You know what - you can probably guess what I'm going to say and you probably won't agree but I say - stick with the 15mg and *!%&$*the consequences at the moment. I've just given up and gone back to 15mg pred cos I wasn't coping and my view is that life is NOW and I feel that denying myself the opportunity to feel better now on the basis of what might happen in the future is just a waste. You have so much going on at the moment and if the higher dose helps you to cope and gets you through the house move, knee ops etc then why not? And once those hurdles have been overcome, I reckon that cutting down will be easier. Tilly has spoken.

    Really though DD, please do think carefully about dropping the dose again - is being in dreadful pain and thoroughly miserable because of it worth it when you can do something about it? Me - I think not.

    Thinking of you.

    Lots love Tilly xxx
  • fudgefudge Posts: 78
    edited 30. Nov -1, 00:00
    Hello DD - it has been a while since I posted, but today as I read your thread I felt the need - lol.
    You are juggling with so many things at the moment, and more will be added - way it goes this thing called life. Anyway, one thing you can permanently delete from your list of ' have to deal with ' is stairs - ohhh the wonderful feeling of never having to walk up and down them or clean them again - better than...................Chocolate :wink:

    The Preds - well they make you feel good now - and now is the time you are going to go through the stress entailed in moving home - and it is stress with a Capitol 'S '

    Once this is accomplished, you can reconsider the Pred. situation, weight gain and the need to keep your weight down to have the TKR without the weight being brought up as an excuse for ' them ' not to be able to perform the deed - as they are apt to do !

    Prioritize DD - become stairless, the rest will follow so much more easily :lol: - :roll: - :!:

    No kick up the backside for you DD - you don't need it - and I couldn't manage it :lol::lol:

    ...........fudge.......
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I bin a good girl, only 10 today and I will stay at that. I know that 15 is better, and lovely, and (on the surface) helpful, but in reality it's cheating me out of a healthier future. (If only you could hear the hollow laugh that went along with typing the word 'healthy' - that is one of the worst swear words in my vocabulary, and believe you me I know a few).

    Thank you all for your answers, they are much appreciated. valval, with so much going on with you at the moment I am expecially touched you took the time to reply - bless you and thank you. I hope your Pa continues to improve and that you can get to see him.

    skezier, being the practised boat-misser I am, I am reasonably certain that TKRs won't be on the menu - I am sure they can find something cheaper and less effective, that seems to be the way of things at the moment. I do wonder if all the rubbish I take for the PA has not helped - no wonder it wasn't touching the knees, that was the wrong ******* arthritis. :smile: I am annoyed with myself for putting everything down to the PA when it was a totally different enemy creeeping in under its shadow. Stealth attack by OA. It's clever this plague, isn't it?

    I can't believe I am going to type this: I miss my unicycle. I knew where I was with that, I was only dealing with the PA. Bah and I are not getting along at all well (that's the zebra I now proudly own, the PA and OA striped creature.) Ye gods I am a grumpy old mare today, I do apologise. I shall slope off and not come back until tomorrow when, hopefully, this dross called life may be slightly brighter. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • suzygirlsuzygirl Posts: 2,005
    edited 30. Nov -1, 00:00
    Daisy, I have been wondering how you are. Sorry to hear that things are such a struggle. I am trying to reduce my pred, it has taken me months to get down to 7.5mg, and settle. Having reached that I am now trying to drop to 5mg, a big drop I know, but I am so impatient. Anyway, my point being, since the drop my degenerative disease in my spine has majorly flared. So, I kind of feel that steroids must do something for OA in some sort of way. I am battling through with my hot water bottle and various other meds, inc NSAIDs which inflame my kidneys. Oh the joy!!

    I don't know how to advise you really, it is such a difficult course to steer. I am dropping as I need to lose weight, reduce my BP and my sugars. I hate the weight gain more than arfur. However, in your case with such a lot ahead of you, it may help to get through the move if you are on a higher dose of pred. Then when you are settled, try to reduce again. In a bungalow or similar it will be less strain on your joints.

    I was advised if the drop is tough try alternate days at a lower dose. I am sure you know this already, but reminders never hurt.

    Thinking of you and hope you can manage to find a happy medium and that the ortho gets in touch soon.
  • jayneysjayneys Posts: 122
    edited 30. Nov -1, 00:00
    DD no boot up the harris or words of wisdom im not very wise ,but ido know you will know what to do .And i realy hope you are much better very soon . aLL THE BEST JAYNE X
  • dachshunddachshund Posts: 7,645
    edited 30. Nov -1, 00:00
    Hi DD.
    I hope you feel better soon pain gets you down and wears
    you out and that makes you feel worse.
    dont let it get you down it you can beat it.
    take care. joan xx
    take care
    joan xx
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hi jayneys, suzy and dachshund - thank you for taking the time to talk to a grumbly old bag! It's been a difficult Easter etc to say the least and I am very tired, which always makes things worse, yes? Sleep is, as usual, a stranger, I have had thirteen days of criticism from my mum about all sorts of things - 'You are taking more painkillers? Hmm. I can manage without. It's a weakness, you are giving in . . ' :shock: No, I am flaming well trying to cope with doing 100plus stairs a day, cooking three meals a day, making endless cups of tea and listening to you ramble on and on and on about stuff I cannot change.

    She has now gone home. I can get as high as a kite on trammies if I wish (if only I could - they don't have that effect on me!) so will make do instead with two pints of Kingfisher and a curry with the lovely Mr DD. Before that I am going to watch the Royal Wedding again, this time without the running commentary from an alternative source to that provided by the BBC.

    Hopefully the usual DD will be fully restored sooner rather than later. Just think - I will be able to READ my own paper tomorrow and not have the Telegraph read to me. Sheer luxury. I hope all of you are as well as you can possibly be. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • barbara12barbara12 Posts: 20,745
    edited 30. Nov -1, 00:00
    Hi DD
    Sorry Iv only just seen your post, for a start you shouldn't be running round after people, surely they know enough to say you sit down we will make you a drink......says me who was doing just the same yesterday :roll: has for the steroids I do understand you trying to reduce them....and I do hope you can find a happy medium ..
    You take care of yourself
    Love
    Barbara xx
    Love
    Barbara
  • Airwave!Airwave! Posts: 2,376 ✭✭
    edited 30. Nov -1, 00:00
    Hey DD, you feeling fed up? Can't say much from here, cept keep smiling, not much help am I! Since you started on about physios, I have been twice since, with appts on the horizon, privately. Nothing will get cured, but as you say, it's a matter of the 'feelgood factor'. I'm all sore from having her massage my spine and find a couple of knotty bits (pain or pleasure???), she's being gentle with me because of arther.

    I expect you know what you want to do with your treatment.
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I don't think I was on about physios, it was sports masseurs, they're the ones who really hit the spot! I hope you are finding the massages beneficial, I have one booked for next week to sort out my tight shoulders, arms and crunching neck - all due to sheer tension, nothing else. I am very lucky in that my masseur lives at the bottom of my garden! Handy or what? :smile:

    Hey Barbara, it's lovely to hear from you. I too like the idea of someone making me a cuppa but my ma moves so slowly it's just better if I do it. I made her a mug of tea this morning, which was drunk with the words 'Best one so far, how many days has it taken?' I honestly don't think she hears herself, I really don't - that's the line of thought I choose to take on it, anyway! :smile: I hope you are OK and having the same lovely weather as we are here. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • annie_mialannie_mial Posts: 5,818
    edited 30. Nov -1, 00:00
    Greetings from a fellow traveller down Steroid Alley; I am also beginning to flag a little, may be time for a little rest on the current dose before making another attempt. I don't want to swerve sideways and hit that brick wall again!

    You have done well, I think, under the circumstances; had I had to spend 2 weeks in my mother's company, the second would have been spent in the local nick down the road. I loved her dearly, but incompatible doesn't come anywhere near it!

    Onwards and...........downwards!

    Love
    Annie
  • julie47julie47 Posts: 6,142
    edited 30. Nov -1, 00:00
    Hi DD

    oh my my my......just read all your post and how you have been feeling lately while I was living it up in chester. (well not quite, but it was nice)

    The 10mg steroids is helping yes? stay on them then until you have seen the orthopedic surgeon. I hope the appointment comes soon and he doesn't go for cheaper options and that replacements are discussed.

    I hope you enjoyed the well deserved pints, curry and reading your paper.(to your self)

    Come on dd climb back on the unicycle you can do it, I know it is hard but we are all here for you.
    Thinking of you
    Juliepf x
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Ah, the uncycle is a thing of the past. That was for the one arthritis, having two is now pictured as me riding a zebra (black stripes for the PA, white stripes for the OA).

    It was Mr DD's turn today - yet again I was deemed incapable of reading parts of the Sunday Times for myself. I responded later with a slightly mis-placed elbow. His voice has nearly returned to normal.

    I have been on 10mgs for six weeks now, but will reduce to 9 this Wednesday. I have no idea how long it will be before I see an ortho, or what he will say, so I may as well plod on regardless. I cannot help but feel I am a total prat for denying myself the only med that makes any noticeable difference, and all because I am running scared of side-effects. So what if useful muscles thin, bones flake, blood vessels leak? My body ain't done much for me in the past 52 years, apart from causing intense distress and annoyance, why the hell do I care what I do to it now? I suppose I know that things could be so much worse if all of the above happen - and, let's face it, life is currently just too peachy to risk that! :smile:
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • carolacarola Posts: 840
    edited 30. Nov -1, 00:00
    Hello my Dreaming Daisy

    I need to catch up with what is happening in DD world however having a quick glance I gather that you are trying to move hoose and reduce your Pred?

    Firstly, if you can manage to move to a house that is more kind to your symptoms then all good. When I was hit with my illness and body was acting like a 90yr old I thanked my lucky stars that I had a lift to my 1st floor flat therefore no stairs to contend with.

    Regarding the Pred. .... my humble opinion would be take what you need during this period of time of selling house etc. and then if you wish, address the Pred. intake when you have the time and energy to punch it between the eyes.
    I requested from my Doc my Pred. in 1mg increments so I can wean myself off them. I am now down to 4mg daily and will stay on this for a few weeks to hopefully ask my ardrenal glands to wake up and smell the coffee and start producing cortisone all by myself - we shall see. When I reduce each time I notice that for about 3 weeks I start a-swelling-and-a-aching so one day each week I take an extra 1mg to try to quiet it down a bit.

    As I have SLE (a form of Lupus) causing PolyArthritis, I have recently read 3 books on auto-immune disease and it is startling the info and research I have been reading linking with Arthritis and the realisation that because I take one particular pill I then am taking a few others to balance out the side effects so been reading alot on Pred. and am so determined to get off it.

    Ocht, I've rambled on - sorry but what I just want to say is if I were you I would take what Pred I felt I needed to get me through this time and THEN address it.
    Hope you are having a decent weekend and Taz, Jeanie and I are sending magical healing thoughts to you from Edinburgh.
    Love, Carol xx
  • carolacarola Posts: 840
    edited 30. Nov -1, 00:00
    Me again!
    Just read that you are going for massage.
    Taz injured his back last week and attend Chiropractor. I had a free consultation with him and I canne believe how much a good Chiro health can help the immune system.
    He also told me about what he knew about all my meds and how my yoga can help improve my body health to dampen down my illness.
    Needless to say, I am now on a proper health kick and he confirmed what a wise choice I made last year addressing nutrition intake.
    The next thing I need to tackle is my environment as that can be a huge trigger to us unfortnate lot who have the body make up to be prone to developing all these pesky illnesses if we encounter the triggers.
    Carol x
  • fudgefudge Posts: 78
    edited 30. Nov -1, 00:00
    Ahhh DD - I think the flesh on your Peach is gone - you are gnawing on the kernel :eek: think of your teeth - needed to bite the bullet in this time of stress - juggling so many problems at once, the Zebra makes good sense, four legs should help with balance and the stripes keep you in line :wink:

    Be kinder to your character - the body may have failed you, but your character certainly has not - strawberry time perhaps :!:

    .........fudge........
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello carola and fudge, many thanks for your input and it's lovely to hear from you both.

    Carola, my immune system has worked against me from birth, you name it I've tried it and got nowhere with it. I am genuinely pleased that all that you are doing is working for you and long may that last - my set of problems are somewhat different and extraordinarily reluctant to respond to anything, I have had enough of disappointment and failure throughout the years and I truly lack the motivation at the moment to embark upon anything else. One thing and one thing only will sort it all out, once and for all, and whenever that deigns to turn up I will be ready and more than willing to succumb.

    I am getting used to the zebra, fudge, it's quite a sight: Lady Godiva I ain't 'tis true, but one can ride a zebra side saddle with some elegance, bath towels to hand to mop up one's fevered brow (and everywhere else!) In reality the stress hasn't even started yet: the house should be on the market by the end of the month, and I shall do what I can to sort stuff out, tidy up, keep it clean, etc etc etc but as for finding somewhere new, well, that'll be the hard bit. On the one hand it would be good to move closer to Mr DD's place of work but on the other I am fearsomely attached to my hospital (and all my personal slaves who work therein in pathology, rheumatology, dermatolgy and shortly orthopaedics) and I don't really want to move too far from it. The thought of having to establish a new framework of medical support is more exhausting than anything else!

    It will all be put on hold for today though: the pub beckons. Vigorously. Woo-hoo! :grin:
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • suzygirlsuzygirl Posts: 2,005
    edited 30. Nov -1, 00:00
    Daisy, enjoy the pub!!!! Things always seem better in there :grin:
  • dachshunddachshund Posts: 7,645
    edited 30. Nov -1, 00:00
    Hi DD.
    How are you feeling today.there is a lot of strees caused by moving house.
    is it a bunglow that is what we have.
    good luck with everything.
    joan xx
    take care
    joan xx
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