Definately Lupus

Well, the lovely secretary of the wonderful consultant at the RVI in Newcastle rang today.. all Ellies bloods show she definately has Lupus, & she has to go in for a few days..intravenous meds ...her white cell count is akin to a leukaemia sufferer ?? anti nuclear factor wrong & waiting for 2 more results to come back ...can there be much more wrong with her blood?!

Thought we were in a `good phase` alas she has slept solidly for almost 3 days. Is it `normal` for Lupus to literally `knock you out` yesterday we had to literally sit her up in bed, gently `shake` her & try to get a response. can anybody give us a rough idea of `first treatment`. also been told sh will go up there once a month for treatment?!

usual 101 questions sorry guys, but you are the best for answere,

x

4 Replies

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  • Hi

    I am not a medical expert but I know that Lupus can knock you out, (me) especially during the "difficult" days of the month - Lupus doesn't agree with hormone imbalance!

    As for the treatment, the first time is always mild compared to the following ones. I experienced nausea, especially the following day, raised levels of anxiety and restlessness and, swelling.

    Please do not go into this without being informed about the side effects of the treatment from a medical expert. Make sure that a doctor will be available at all times and willing to aswer your questions.

    Most importantly, the person undergoing this treatment will need your full support - be there for them, this is not an easy ride.

    Best Wishes

  • all the very best to your daughter x

  • Hi,

    Thinking of both you and your daughter for your difficult time of it. I can imagine you have mixed emotions, possibly a feeling of relief that she is diagnosed after she has been so ill but also uncertain about what happens next and how she will cope. I wish your daughter all the best and you as her carer too. Marion

  • can i ask who u see at rvi as im under a doc at freemans and feel like im banging my head against brick wall and my doc sending me to see someone else ty

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