infliximab one step nearer!

Wonkylegs
Wonkylegs Member Posts: 3,504
edited 1. Nov 2010, 12:42 in Living with Arthritis archive
Well today a letter arrived from the rheumy nurse advising me that I'll hear from the medical day unit soon to arrange my first infusion :shock:

yikes .... now it is nearly here there are loads of questions and concerns, and yet I have known this was coming and been champing at the bit for the day to arrive!

not sure if I'm anxious, worried, thrilled, scared, delighted or all five!!!

I have things planned for next month ..... bet they try and start me on a day I have plans :roll: ... wonder if I can choose a day ....... oh the questions!!!!

poor med day unit :wink:

WOnky

Comments

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

    I know you have been waiting for this for a good while but I don't blame you for feeling all five emotions at the moment. Am sure others who know from experience will be able to give you some practical advise but I do hope it all goes well for you when the day finally arrives. Just leaving a hug or two in the meantime. ((((( )))))
    take care
    love
    Chris (from a very wet and cold bit of Yorkshire!!)
  • skezier
    skezier Member Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Wonky,

    Kinda good news eh?!

    Your bound to be feeling the 5 but Flower it so could help you and be honest its a long time coming as well!

    I can sort of choose a week for the drip I have ( in fact in my case how about never :lol::lol: Miss l Legs will certainly have her work cut out the next time :wink: Most cuddly dog out there though :D ) so maybe you can? the ward that do the drip seem to have a day of on drug and that's how they do it here but if you got plans maybe they would let you change it to the next week depending on their system?

    Look I have to say i am so pleased though cus Wonky its a long tie in the waiting! He has over exited slurps and bounces for you so I would run if i was you... I sending ((((( ))))) and you can't out run them :wink: Love Cris xx
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    Thanks Chris & Cris

    you are both right of course!

    It seems to have taken nearly a year to get to this stage .... :shock: .... typing that means it really does feel like a long time!!

    I know I have to bite the bullet and try it ..... and well it can't be worse that your drip cris .... so if you can do it well I flippin better get on with it :wink:

    ta for the hugs, slurps and bounces :o which I am sadly unlikely to outrun :lol::lol::lol:

    this bit of Yorkshire has been enjoying a dry but windy day today .... thanks Cris for sending the wind our way :wink: hopefully it will be dry tomorrow too ..... got some garden stuff that badly needs doing whatever the weather is.

    hope you both have a good weekend .... with plenty of happy cheerful customers for you both, and an arthur free one if that is ever possible :wink:

    hugs
    WOnky
  • skezier
    skezier Member Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Wonky,

    ...... oh come on I like to share :lol::lol::lol: we get a lot of wind here... its very open.... takes a bit of getting used to this gale stuff :wink: Bit like being at sea..... :lol::lol: So I sent it up country :lol::lol:

    Promise will get on those bellows and get better for tomorrow.....

    Flower its got to be a mixed emotion and that's normal!

    Its been forever and well hats so much good news cus it might be the thing that truly helps you!

    Hey its nothing like the drip I have that I can promise you but you might feel a bit wiped out..... We will be with you.. and yep I will pigeon for you as well :wink: Live and he got more slurs.... partly cus of the cheese sarnie I just made and he will be up soon to bounce you to sleep..... He is more interested in his mate finishing lesson 15...... :lol::lol::lol: Cris xx
  • dorcas
    dorcas Member Posts: 3,538
    edited 30. Nov -1, 00:00
    Hi Wonky :D

    Great news that you've to start soon on the Infliximab. :mrgreen: :!:

    you've had such a bad time of it recently... so here's hoping it works really well for you. :wink:

    It's only natural to be a bit apprehensive beforehand but it will be well explained to you before you get started.

    I've been getting Infliximab Infusions since mid- August (due to get fourth one mid Nov)

    You can ask for the day of your infusion to be changed if need be! I changed mine from a Thursday to a Friday 'cause it suits me better. :wink:

    The drip itself isn't painful at all... takes about 3hrs to 'infuse' then you have to wait a few hours before they let you go home... so take a good book in with you.
    As Cris says having these infusions can leave you feeling 'wiped out' and headachey; certainly for me that's how it is... zaps me of all strength...so I just go to bed as soon as I get home and more or less stay there for at least 24hrs. (more like 48hrs truth be told. :oops: )

    Having the infusion may not affect you the same way, but at least if you know it might make you feel washed out, then you can at least be prepared for it!

    Good luck with it Wonky :wink: got my fingers and toes crossed for you. :mrgreen:

    Iris xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I loved having infliximab - relaxing in a recliner, given a cuppa and some biccies, book to read or MP3 to listen to, plus sometimes other patients having other things done so we could compare notes, conditions and treatments. I was very, lucky in that I had no side-effects whatosever apart from I producing antibodies very, very quickly and so stopped after three (or was it four? Doesn't matter) infusions. According to my GP at the time I am based on cat protein, hence my failure with mouse-based meds. Never mind, eh? I wish you well and I sincerely hope it works better for you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • marion1952
    marion1952 Member Posts: 996
    edited 30. Nov -1, 00:00
    Hi Wonky

    I'm excited and apprehensive for you too.. but I'm sure you will be well looked after and it will be great if it gives you some improvement in 2011..

    All the best

    Marion x
  • ironic
    ironic Member Posts: 2,386
    edited 30. Nov -1, 00:00
    Hi Wonky,

    Well at last you are getting somewhere. I’m with you as I would be apprehensive. For me it is the waiting that is the worse.
    I do hope you don’t get any side effects, and I expect you will be given time to ask all your questions.

    How are things with you? Do you feel that the Leflunomide is out of your system yet?

    Take care of yourself,
    Lv, Ix
  • barbara12
    barbara12 Member Posts: 21,093
    edited 30. Nov -1, 00:00
    Hello Wonky
    I am so glad you are at last going to get your treatment, Its natural for all soughts to be going through your head, we will all come with you, and help you through it,
    I really hope that it works for you.
    Sending lots of hugs (((((())))))
    Barbara xx
    Love
    Barbara
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    HI Iris, Cris, DD, barbara, ironic & marion

    it is good to know some of you have been there before me testing the way ..... it doesn't feel quite so scary that way :wink:

    I am hoping it is sooner rather than later now ... less time to worry, especially as I am really noticing having reduced the steroids down from 10 to 7.5 :shock: and the hands are protesting rather loudly this weekend. (couldn't possibly have overdone it could I :roll: :wink: :oops: )

    Ironic ... funny you should ask about the Leflunomide .... I don't honestly know, but the consultant said it would be around for 'a good few months' yet :roll: THe itching was better, but is returning slightly, which may be the reduction in steroids - who knows :roll:

    One thing I'm going to sort out is for someone to walk littlelegs in the daytime for the infusion day and the day after if hubby isn't at home - and also I think I'll probably not try to get home by train and bus .... but get a friend to pick me up. Can't do that until they send for me though!

    thanks again .... & Ill post as soon as I get a date :wink:

    Wonky
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Arranging transport home could be a wise move wonky, I was lucky in that I had no after-effects at all and could drive myself (Mr DD did the honours for the first one) but other people do feel tired or perhaps a little yucky, so a lift or hospital transport is a good idea for your first one, just to see how it goes. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben