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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) https://lupus.net/living/frequent-utis-part-1 2) https://lupus.net/living/frequent-uti. 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 https://lupus.net/living/frequent-utis-part-1
    https://lupus.net/living/frequent-uti
    Has your medical looked into possible causes of your uti’s? Charlotte lupus.net 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) https://lupus.net/living/frequent-uti (2) https://lupus.net/living/frequent-utis-part-1 You are not alone!
        Gabby (team member)

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