Lupus and 24

Help!!!!

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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

: )
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  1. rob's Avatar
    Hi Lupus and 24,

    Welcome to WHL. The best way to get fast answers to your question is to post the question in the Lupus Medications part of the public forum. While there's nothing wrong with using your personal blog to ask questions, the public parts of our website offer more visibility to other members, and will yield faster responses and results for you.

    I have no personal experience with Retuximab, but I'm sure I remember other members here having been on the drug. Hopefully, one of them can help.

    Once again, welcome to WHL,

    Rob
    Senior Moderator
  2. Lupus and 24's Avatar
    Hi Rob,

    Thanks for your reply, still trying to figure out how to use the forum. Have just posted it onto the forum you recommended.

    Thanks again
  3. rob's Avatar
    Quote Originally Posted by Lupus and 24
    Hi Rob,

    Thanks for your reply, still trying to figure out how to use the forum. Have just posted it onto the forum you recommended.

    Thanks again
    No Problem! Your post shows up fine, and you should start to get some hello's and hopefully some answers soon.

    Also, if you look at the top right corner of the page you'll see a white box with the words Advanced Search underneath. You can enter any term you like and hit the little magnifying glass button to do a quick search of the site, or you can click advanced search and do a more specific and detailed search for info.

    Hope this helps,

    Rob