Dorcas and infliximab

Options
13»

Comments

  • ritwren
    ritwren Non-active member Posts: 928
    edited 30. Nov -0001, 00:00
    Iris I'm delighted to hear you've a tentative response from the Infliximab. That's a really positive start. Too bad you're feeling wiped out for a couple of days with it 'tho. I hope that settles down for you and gets easier but you sound as always as if you're taking it all in your stride. Fingers crossed things are on the up for you , you surely deserve them to be.
    How did the hospital apt. go the other day or have I missed a page of the thread?
    Big hugs always, rita. :)
  • lavenderlady
    lavenderlady Non-active member Posts: 409
    edited 30. Nov -0001, 00:00
    lets hope its helped you a lot, and you get no side affects to suffer with
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -0001, 00:00
    Hi Cris, DD, Speedy,Wonky, Rita and Michelle :D:D:D

    Thank you peeps for your good wishes!
    I'm having to reserve judgement on the effects of Infliximab as I'm having a lot of 'bother' with my knees and neck and the swelling in my knees has returned with a vengeance. :roll:

    I'm not up to the full dose yet of 300mgs (I think that's right) as it takes 3 'priming doses' to get up to the stable dose.....so it probably is too soon to expect too much!.

    The good thing is that the side effects didn't last as long after my last infusion... which was 200mgs :D

    ..... still a work in progress :mrgreen::wink:

    Iris xxxx

    ps.. Rita, you didn't miss a thread.... I had to cancel my appointment .....couldn't get there as I was let down at the last minute with a 'lift' :roll: and Wally can't drive that far..yet. :D now seeing knee ortho on 21st. :wink:
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -0001, 00:00
    Hi Iris, that's good about the side effects but not so good re knees and neck, Like you say though jury will have to stay out until you get to full dose and it is thoroughly in your system.

    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.
  • frogmorton
    frogmorton Member Posts: 30,427
    edited 30. Nov -0001, 00:00
    Hi Iris

    Good to see you :)

    Not so good if knees and neck are not behaving.

    Wally is though? :wink:

    So long as you can survive the side effects and they are not too long it is worth a try isn't it?

    I hope you are having a good weekend and the sun is shining?

    Love

    Toni xx
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -0001, 00:00
    Hi speedy :D Hi Toni :D

    it's definitely 'wait and see' for the infliximab... but at least I'm on it :D and these side effects I can cope with. :wink:

    Toni... wally @ 14weeks is doing fine :mrgreen: I'm increasing gradually the tasks I try and if he complains then I stop.... not very scientific is it :lol::lol:
    he doesn't like driving so I can still only drive short distances.. and for extra support I wear a wrist splint.

    Wally can help hang out washing, help with getting dressed...including fastening a bra... but doesn't like small buttons!, dust , open some doors (if they're not too stiff), pet the dogs!, use a knife (but not cut through anything too dense), peel a banana but not peel potatoes.:lol::lol:
    He wants to be the dominant hand again but I think we've a way to go before that happens automatically.

    best of all?.... I could hold my grandson's hand when crossing the road on his first day of school, which was just- so- special.

    Mandy therapist has now stopped the hand therapy sessions...as she was latterly only taking measurements rather than providing 'therapy'; mandy said that any further improvements would be because of what I was doing myself day to day rather than anything she could suggest.... so it seems right!
    ... another milestone I think for wally.

    speedy.. I hope you get the help for going back to work? and Toni...hope you've not had any more migraines and that the bursa pain has settled ?

    Iris xxxx :mrgreen:
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -0001, 00:00
    Hi Iris
    I do hope the side effects settles down, hopefully its still early days...so everything crossed for you...well not my legs..to flipping painful.
    How lovely that you could hold your Grandsons hand...that must have made it all worth it bless. At least wally is behaving himself , and doing some of your jobs, its seems such a long time ago since you had it done, but really you have come so far, in such a short time.
    You carry on improving.
    Lots of love
    Barbara xx
    Love
    Barbara
  • dreamdaisy
    dreamdaisy Non-active member Posts: 31,520
    edited 30. Nov -0001, 00:00
    Hello dorcas, I'm sorry about the troublesome joints, what a nuisance. I am sure that the infliximab will start to get to work soon, it had better! Do you have another two weeks before your next one? I think it went first infusion, two weeks then another, then a month and another. I can't remember how far I got - but it did initially have a good effect. That bit I do remember!

    I am still bothered by my knees etc depite the good inflammation marker results on my bloods. The pain has never gone, and they still swell on a very regular basis. Grrrrrrrrrrr. An extra 3" was added to my left knee after about 45 mins vacuuming (including a sit-down) and that took 48 hours to go.

    Wally, on the other hand (!) seems to be doing fine - you and he a very well aquainted now, aren't you? How lovely to be able to hold your grandson's hand - that is one of my biggest losses since my first synovectomy, I can't walk hand-in-hand with The Husband any more. It's one of my biggest gripes about this whole malarkey! I know that that is a little quibble but sometimes it is the little things that cause the most aggravation. How soon before you can go longer drives? Can anyone give you an idea or is it one of those 'individual' things that so much is when you have arthritis? Anyhoo, I hope you are feeling OK today. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -0001, 00:00
    Hi Barabara :D Hi DD :D

    Oh Barbara... your poor painful legs :shock: what the docs suggesting to help them then :?: are you considering surgery?

    It was the very best experience for me in years... being able to hold Tom's hand... and I've locked away the picture of his wee face and how ' fit to bursting' with happiness I felt at being able to do that seemingly small thing!
    I've waited so long to be able to do that... and I owe my surgeon a big debt of gratitude.

    Damsel..you're spot on about the timescale for the infusions... my next one is 1st October which is 4 weeks from the previous one; then it'll be every 8weeks. :wink:

    I know you've been having such a lot of pain in your joints.. including your knees... seems so unfair they can't try you with something else? I know you're on Humira.... but is it working properly if you're still having such awful flares? :roll: there are newer ant tnfs DD... would it be worth discussing with rheummy? Are you going there on Tuesday? or am I mixed up.. :?

    you're right about it being the 'little things' causing the greatest irritations.... living with arther's just so frustrating! and it's horrible for you that it's meant not being able to hold your OH's hand. :( Grrrrr!!! :x

    The driving? no-one can tell me about.... wrist replacement is such a new op and to be honest I don't think the docs know. :roll: it's just down to me and wally I guess. :mrgreen:

    love and pain reducing (((hugs)))

    Iris xx
  • skezier
    skezier Non-active member Posts: 11,333
    edited 30. Nov -0001, 00:00
    Hi Iris,

    You for got to say Wally can do cyber barrows :lol:

    I think you have reached an incredible milestone with Wally, so a big pat on the back for you there!

    I am sorry the jury is out on the infusion..... maybe the increased dose will see that change? I am no sure how they work but so hope your next one will be less side effects and better results. When is it flower?

    I forgot to say I take the mtx after the sheepies just in case they make me feel odd..... and .... at least they are sat looking at me and not in the bin :lol::lol::lol: (((( )))) and a very special congratulatory dandelion that I have been saving till you got to 30% :D Cris xx

    Ah just seen you say when your next one is x
  • dreamdaisy
    dreamdaisy Non-active member Posts: 31,520
    edited 30. Nov -0001, 00:00
    skezier, are your sheep also on meth? :D
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • skezier
    skezier Non-active member Posts: 11,333
    edited 30. Nov -0001, 00:00
    Hi DD..... they might be tramadol and pregabalin... (did a sale floating from the sky)...figured with Stampy's behaviour she has secret stash of something in her pockets :lol::lol::lol: xx
  • marion1952
    marion1952 Non-active member Posts: 963
    edited 30. Nov -0001, 00:00
    Hi Iris

    Wally sounds like he is exceeding all expectations! Brilliant!

    I have a lovely picture in my mind of you holding your grandson's hand going to school last week..

    Still keeping my fingers crossed for you about the Infliximab.

    Marion x
  • ritwren
    ritwren Non-active member Posts: 928
    edited 30. Nov -0001, 00:00
    Great to hear how far Wally has come on. Holding your little Grandson's hand on his 1st day at school is priceless. Brings tears to my eyes. :)
    I'm so sorry to hear of your flare up despite the treatment. I guess the best that can be said is that it's still relatively early days. :( Hopefully as your treatment dose increases up to it's full potential it will kick in. I will as always, keep whatever I can crossed and send you big hugs.
    rita
  • dreamdaisy
    dreamdaisy Non-active member Posts: 31,520
    edited 30. Nov -0001, 00:00
    Morning dorcas, I hope all is well. This is just to let you know that I now have my humira warning card! Thank you for the tip off, the hospital today gave me a 'Starting your Humira' pack - not bad going considering I started it 14 months ago! It has a helpful DVD, which I doubt I will watch - I really cannot see the need. I hope you are OK today - is your next dose at the end of this week? Do I need to fire up the ice-cream van? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben

Categories