Iris (Dorcus) needs some postive vibes

2

Comments

  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
    Morning Iris
    Hope that you had a good nights sleep and that this morning you are feeling ok.
    My fingers are crossed for you that the med works and gives you much relief. Have a nice weekend with plenty of rest.
    thinking of you
    love juliepf x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Morning gorgeous. Thinking of you. 'Nuff said. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmorton
    frogmorton Member Posts: 30,087
    edited 30. Nov -1, 00:00
    Hi Iris

    Hope the loon helped I bet he/she did :grin: and always a cuppa.

    Hoping all went well and you are feeling some benefit - well at very least you are ok after it.

    You take care and keep warm and safe - the white stuff up there?? :evil

    Love

    |Toni xx
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
    Hi Iris, hope you are recovering and starting to feel the benefits.

    Take care,

    Speedy
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    HI Iris

    hope you not as washed out as I am with the old inflixi-wotsit :roll:

    rest up all you can, and know that we are sending all our love and lots of hugs.

    hubby says you can have half his very secret stash of choccy :wink: (I thought it had all gone :shock: )

    hugs
    WOnky
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    Hello Iris
    I really do hope that you have manage some quality sleep, I know its so rare, but I do hope that you are feeling some benefit .
    Sending all the good vibes you need, and lots of very warm hugs (((((())))).
    Thinking about you
    Love
    Barbara xxx
    Love
    Barbara
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Morning dorcas, I hope all is as well as it can be. I am thinking of you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • mp1952
    mp1952 Member Posts: 425
    edited 30. Nov -1, 00:00
    Hello Iris

    just a quick message to say hope you are recovering..

    Marion x
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
    Hi Iris,

    I am just popping in to send you some more gentle hugs and good vibes. Fingers crossed you are beginning to feel a bit more comfortable.

    Thinking of you,
    Lv, Ix
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Iris,

    Got everything crossed for you and will be in your pocket.... pins and all :wink:

    Leaving you a bone drat and some special dandelions no-one has yet pulled out..... Hang in there my friend. (((((((((( )))))))))) and love Cris xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Morning dorcas, I hope all is as well as it can be. 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
    morning dorcass
    got my fingers crossed that you are feeling ok
    take care
    juliepf x
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello Iris

    Just popped in to say I am thinking of you.

    Lots Love Tilly xxx
  • jilly
    jilly Member Posts: 503
    edited 30. Nov -1, 00:00
    Hello Iris , sending you good vibes hope all is well ..jillyx
  • frogmorton
    frogmorton Member Posts: 30,087
    edited 30. Nov -1, 00:00
    Hey Iris

    I am aware that you lot actually LIKE dandelions.....

    However there are not too many left at the moment so.... 008.GIF

    Will these do?

    Keeping fingers crossed for you.

    Love

    Toni xx
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
    Hello everyone and thanks you so much for all your support and good wishes on this thread... I did/ do appreciate it. :grin:

    I've been having a shift time with arther laying siege for weeks now and despite increasing meds and having had knees aspirated and injected and IM steroid injection.. arther continues unabated.

    I saw my rheummy today and he has decided to stop the infliximab infusions after all :eek: (so Friday's 'trial' was pretty much a waste of time :roll: )
    I'm not really disappointed by having to stop inflix as I've not felt any benefit nor been 'well' following infusions and my blood results since I started the infusions in August show ever increasing CRP & ESR readings......so it's logical to discontinue.

    I am confused though about where we go next. Despite being told on Thursday (by a different consultant) that I would be eligible to start Tocilizumab I've been told today that I won't be. My rheummy says it's not been licensed for PA. :shock: although acknowledged it was written in my notes by the other consultant that Tocilizumab was an option. :cry:

    Instead we are to try other combinations; Mtx inj 25mg , increased Amatriptyline 75mg and he's to introduce Leflunomide and Lodine.... or he may decide to restart Adalimumab :shock: I'm really not sure of the timings of any of this but I'm sure it'll all become clear over time. :roll:
    But...before starting the 'new' drugs he wants me in hospital for the full day on 9th Feb for something called a 'Red Injection' in my right knee. :???: Apparently it's a combined antibiotic and kenalog joint injection (red in colour hence the nickname) that requires the knee to be splinted afterwards..... has anyone heard of this or had it done?

    He's also sending me to see the ortho knee surgeon. :eek: but agrees that the hand surgery shouldn't be put off ....

    A bit of a mixed bag of an appointment and it's left me feeling somewhat confused and a little deflated. :!:

    Thanks again all.......

    Iris xxxx
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Oh, dear Iris, what a time you are having. It has all been going on for such a very long time too. You have my utmost sympathy. I am sure you have been "left feeling somewhat confused and a little deflated." I would think that is putting it mildly. Anyone would. I wish I could offer some advice/help but I haven't got any to give you. I am full of admiration for you though and the way you soldier on whilst all this surrounds you.

    All I can do is send you my love and I am thinking of you but somehow that seems so inadequate.

    Love
    Elna x(())
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
    Hi Iris, glad you are up to posting - what a tough time arther is giving you at the moment.

    Sounds like your consultants are gearing up for a trial and error approach to tackling rampant arther. Let's hope one of their first concoctions works ....

    Hope the "red injection" makes a difference to the knee.

    What is the time frame on the hand surgery? Is that dependent on arther being better controlled?

    The toxi-whatsit drug that is not yet licensed for PA ... are there ways round this? Lots of drugs are prescribed for conditions they are not actually licensed for.

    Speedy
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • mp1952
    mp1952 Member Posts: 425
    edited 30. Nov -1, 00:00
    Hello Iris

    Hmmm, that's rather confusing isn't it...

    Glad that you are off the Infliximab anyway, if it was making you feel so rotten.

    I did read a 'patient story' on the NRAS website about a young woman who had a second spell on Adalimumab and it worked better for her than the first time..

    I think it can only be a matter of time before Toczilumab is available for PA sufferers too..

    I do hope the 'red injection' gives you some relief - it sounds like a good combination of drugs.

    Keep you chin up Iris - there will soon be light for you at the end of this long and dark tunnel ..

    Take care

    Marion xx
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    OH Iris :eek:

    What a mixed bag of an appointment :eek: I am so sorry that you went through the trauma of Friday for no apparent reason, and also am mad on your behalf that the Tocili-whatsit doesn't now seem to be an option :roll:

    I am left speechless at the long list of possibilities that have been suggested, and can only keep my fingers crossed that he becomes more decisive and clearer in his thinking pretty soon for you :wink:

    As ever it seems that you will have another period of 'wait and see' before you'll know what will or won't work :x :x I wish sometimes arthur came with a handbook with a list of
    all the meds he'd hate :wink:

    you take things easy for a while, and hopefully someone will be along who knows about the 'red injection' soon ...... sounds mighty special to me :smile: so maybe that's why you're getting it :wink:

    please take things easy and let others do what they can to help you for a bit.

    loads of hugs
    WOnky xxxxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh wonky, my arthritis does have a book of meds it hates. It's blank.

    dorcas, dorcas, dorcas. Hells bells girl, what a malarkey. Why on earth did they bother with Friday? I think anyone on here could have told them it was fundamentally a silly idea. If the inflixa was going to do anything it would have done it before your catastrophic reaction - hell, even I am believing their flaming propaganda now! I don't know about a 'red' injection and splinting: I have had radio-active stuff injected, followed by 24 hours isolation and 6 weeks away from children (due to increased radio-active levels - I have had this done twice, strewth this malarkey has affected my income one way and another!) but never what they are proposing for you. I wonder if the helpline would have any info? I really hope you start to feel a little better soon. I am in the PA pit with you, at least we can keep each other company! 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
    Iris what a mixed bag of an appointment that was
    no wonder you are fed up
    I wouldn't have been able to remember al that info so well done.
    Good luck with the 9th of feb
    Sorry that the infusion didn't work for you hope the new cocktail that you will be starting works wonders
    always thinking about you
    take care
    juliepf x
  • frogmorton
    frogmorton Member Posts: 30,087
    edited 30. Nov -1, 00:00
    hi iris

    not sure if that was good or bad....bit confusing i think....at least they are still trying to help. That IS reassuring,but you must be disappointed taht they can't now try the tox :sad:

    I hope the red jab goes ok.....haven't had it done but hope it is a good one for you and that it works. Sounds diferent for sure. Maybe they suspect that there could be an infection too? Or maybe hitting it with both can do the trick/.

    Can I sign your plaster? Can i draw you a dandelion?

    LOve

    toni xx
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Iris,

    Flower its no wonder your confused! When ever thee are more than one consultant involved it gets confusing cus they all have different ideas and agendas for their particular expertize.

    I now the hands are important but Flower so is that knee if not knees..... you have to do what you think is best for you where surgery is concerned. Shame they can't do it as a job lot but that's not gong to happen. Tis also unfair of me to even think about putting you through that in one go ...... :oops: :oops: Just want things to be better for you as ft as it can be...... honest :wink:

    Like the sound of the red jab.... might see if that's a possibility for the spine actually....... will see what she says next week but flower its obviously going to have some short term impact for you and its all so unfair!

    You hang in there and just know you are not alone in this. The people here will be there for you every inch of the way. More ((((( ))))) and love Cris xxx
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    Hi Iris
    I dont know what to say, no wonder you are confused who wouldnt be, hopefully someone will help you make sense of it all.
    I just want to come and give you a big hug and make everything alright for you.
    I really do wish you well with whatever they decide will benifit you.
    Lots of love
    Barbara xxx
    Love
    Barbara

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