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Thread: Help!!!!

  1. #1
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    Default Help!!!!

    Hi everyone this is my first time on here so not sure if I am doing this right???? But here it goes. I am 24 and was diagnosed with SLE when I was 18. I have been on loads of different meds that many of you are taking at the moment. I was recently (a year ago) diagnosed with severe lupus nephritis and although my results are heaps better, my kidney doc is still not satisfied with treatment and is worried that if the situation is not controlled early that I could possibly be looking at dialysis and transplantation which SCARES me soooo much!!!!!!!!

    He has suggested that I take Retuximab injections because there is no other real choice besides the steriods and myfortic which I am currently on plus many other things as well.


    Does anyone know or have any experience with this drug????? any opinion, knowledge or advice would be such a great help as the risk of infections really scares me.

    Please help

    : )

  2. #2
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    Someone else will come along and possibly share their experiences with it. I have no first hand experience with it myself, but there is nothing wrong with getting a 2nd or 3rd opinion from other doctors. Especially see if your nephrologist & rheumatologist have talked with each other about it. Maybe use your pcp as the "mediator". I do know that whatever med you use, your doc will do regular blood work to follow the progress, and watch for signs of trouble, and call for other meds if necessary. You'll have to weigh the risks versus the benefits, and that can be tough to do. Be sure and write things down as you think of them, so that you can ask your docs questions next visit. I used to write down their answers 'cause I couldn't remember them by the time I walked out the door, but now they've got a new computer system, and they print me out a report each visit, which is much easier.

    btw, welcome to the forum!
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

  3. #3
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    Welcome to WHL.
    We have quite a few young members here, so I'm sure that you will find some support and information.
    Like Jmail, I'm not familiar with that med, but I'm sure that someone here will be.
    Hugs,
    Marla

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