Emergency rheumatology appointment for tomorrow!

janie68
janie68 Member Posts: 1,186
edited 27. Aug 2011, 17:41 in Living with Arthritis archive
Well I was doing so wellish on Cimzia, but I have felt in the last few weeks that it is losing its efficacy. Awful pain returned and swelling, you know how it goes.

So a phone call to the biologics nurse on Monday, she phoned me yesterday. It is either failing or its the damage that has already been done that is the problem or both. My bloods steadily rising again, ESR 35 last week from 19 in January which isnt much but enough, all other bloods showing inflammation what ever that is.

So received phone call today to attend tomorrow afternoon, eek, that was quick for urgent appointment,

So, this is the 3rd anti-tnf, but she says there are more treatments to try, thing is the next ones are infusions, and I really dont like them! Rituximab I found quite stressful, my body didnt like it either with high BP etc.

But we shall see, can I call upon you lovely peeps to attend pocket duty at 2.30pm?

Sorry for long post

Janie x

Comments

  • weejean
    weejean Member Posts: 346
    edited 30. Nov -1, 00:00
    Hi Janie

    Make room for me in your pocket. Hope everything goes well xx
    Big Hugs
    Jean xx
  • mig
    mig Member Posts: 7,154
    edited 30. Nov -1, 00:00
    Just count me in as well.Mig
  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
    Hi Janie

    Hope the appointment goes well tomorrow and they can find another med to help you.

    will be in your pocket so don't worry.

    Juliepf x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    What a blow. Count me in for tomorrow, I hope they can do something or find something that works as meant. Take care. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    hi i will be there as well good luck val
    val
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
    Thanks everyone!

    I will empty my pockets tonight of old tissues, sweets and fluff in readiness for tomorrow.

    Hubby coming along too for support, he actually went to sleep once when I was seeing the nurse in the same room. Can you imaging how embarrassed I was?? Imagine I mean :oops:

    Janie xx
  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    Just wanted to wish you all the best for tomorrow.
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
    Hi Janie,
    It is good that your husband will be with you tomorrow. Do you want me to bring a couple of matchsticks just in case he gets the nods again...sorry that did make me laugh. Mind you my hubby can catnap anywhere so it shouldn’t surprise me. :lol: Glad you have made room for us in your pocket, I will be thinking of you at 2.30 with everything crossed for you.
    Lv, I x
  • frogmorton
    frogmorton Member Posts: 29,880
    edited 30. Nov -1, 00:00
    Oh Janie :sad:

    l am gutted on your behalf :sad:

    This is really so upsetting l hope they do have some ideas....should the biologics promote a total remission or is this a flare and temporary?

    If so maybe a course of oral steroids might help?

    Everything crossed for you that they have some ideas and help you

    Love

    Toni xx
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
    Hi Toni

    Oral steriods are in my opinion the cruellest drug, they mask your symptoms, make you put on weight, grow hair in places well you know, put up your BP to horrendous levels. Thats what they did to me when I was on them, but it maybe time for another lot, I hope not though!

    Thanks for all your kind words everyone, I will update you later today

    Janie xx
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
    Update tomorrow, I am really tired, but not much further forward

    Janie xx
  • roses1
    roses1 Member Posts: 1,850
    edited 30. Nov -1, 00:00
    Hi Janie,

    Sorry i missed your pocket duty :oops: Hope the appointment went well and they sorting you out!

    I will pop in tomorrow
    Sleep well

    Rose x
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Janie,

    I also missed it flowr, I am sorry but I hope it went ell and will look out for your up date. Cris x
  • frogmorton
    frogmorton Member Posts: 29,880
    edited 30. Nov -1, 00:00
    Janie

    you are right about the steroids in a sense, but if you are desperate enough??? :sad: :sad:

    I hope you are ok today???

    Love

    toni xx

    Ps coffee with Rose and l next time....DEFINITE!
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
    Hi everyone

    Ok sp definite inflammation. DAS score high. New set of bloods done incl thyroid, immuno, CCP, Rh factor, etc to check for underlying condition. Ultrasound scan referral for hands and feet to go to but waiting list 4-6 weeks.

    She wouldnt give me any steroid injection or infusion as that would jeopardise the ultrasound results, so great Ill suffer for 6 weeks then shall I?

    Imsee my consultant on 22nd Sept anyway so all results will hopefully be available for him to assess next step, new treatment or poss clinical trials.

    But how does help me when I go back to work in 2 weeks? I struggle enough when I am well, if I go sick again then thats it, final review!

    I will really have to consider ill health retirement now, if my job is going to go down the toilet.

    Im quite frustrated by it all, they dont seem to grasp how painful it is and I cant wait all this time, gggrrrrrrrr!!

    Going to watch x factor soon

    Janie xx
  • roses1
    roses1 Member Posts: 1,850
    edited 30. Nov -1, 00:00
    Hi Janie,


    They do not understand the pain we suffer!

    Waiting lists for scans well you would think they would just send you as there never seems to be anyone waiting when you get there :???:

    Good luck with the rheumy at least he will have all the results back , whats the clinical trial that may be on offer?


    Could you do part time work instead?

    sorry not much use am i :lol:


    Keep your chin up (((((hugs))))

    Rose x

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