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Chronic UTI’s & lupus nephritis

I was diagnosed with SLE over 25 years ago. Over the past year and a half I’ve had countless UTI’s. I recently was referred to a urologist who ordered a renal ultrasound that reveled further testing is needed. I am scheduled for a renal CT. I’m wondering how many of you have had a similar experience and if so, were you eventually diagnosed with lupus nephritis? It has always been my biggest fear. Thanks.

  1. , I'm so sorry to hear you are dealing with this intense pain and discomfort. While I have not had that experience, one of our patient leaders wrote about her experiences with frequent UTI's in a two part article series 1) 2) I would definitely recommend reading about her journey, as it sounds similar to yours. I can't speak to your situation but I can share that this author does not have lupus nephritis. It's certainly possible to have UTI complications without being diagnosed with lupus nephritis. I hope this helps!
    Gabby (team member)

    1. thank you for the information

    2. thank you. I think part of the problem is that I am taking Tamoxifen as I recover from breast cancer and it is an estrogen blocker.

  2. I’m so sorry you are experiencing this. I can relate as I’ve had countless uti’s over the years. I’ve had just about every test done but a route cause could not be found. I was also worrying my kidneys were being affected. Please feel free to read my own experience in case you find it helpful
    Has your medical looked into possible causes of your uti’s? Charlotte team

    1. Yes

      1. Hi ,
        Thanks for chiming in and joining the conversation.
        Have you experienced multiple UTI's and/or have been diagnosed with lupus nephritis as well? ~Doreen (Team Member)

    2. yes just recently i had two within a month and it’s suck what can we do to stop this

      1. , I'm so sorry to hear about how much pain and discomfort you have experienced this past month. One of our patient leaders wrote a couple of articles about her experience managing frequent UTI's alongside lupus. I'll include the links here in case there is any helpful information in there for you: (1) (2) You are not alone!
        Gabby (team member)

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