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What I have been experiencing is BP elevated with unknown causes, swelling in my feet and hands plus ankles, foam in my urine increasing the last two weeks and still experiencing lupus symptoms. My rheumatologist said my body makes lots of antibodies but my nephrologist ordered more tests this week, I asked her if she would be willing to do a kidney biopsy. I know kidney biopsies are invasive, but again I don't want to wait months or years and then something pop up. Just needing some feedback… read more
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Members rallied around a question about lupus nephritis symptoms and the push for a kidney biopsy, sharing personal experiences that ranged... Read more
I'm stable now! Still leaking protein, but my kidneys are back to functioning (they were failing by the time I got diagnosed) and my blood work and most symptoms (except fatigue) are stable. I think they called it "serologically active, clinically quiescent." One thing I tell others is that getting a kidney biopsy (which was surprisingly painless for me) is a win/win situation: if it comes back negative, you'll have peace of mind. If it comes back positive, you'll have a treatment plan!
@A MyLupusTeam Member wow diagnosed with both on the same day? That's such a journey and I hope that he is having good treatment and getting by. The one thing I can say is I am learning my body fully and what is present and understanding a lot of doctors look at test results and then others look at symptoms.
@A MyLupusTeam Member Please read her story. Her book shares her inspiring and difficult journey with lupus. 💜
@TeresaKendrick--I understand--we healthcare workers are the worst at taking care of ourselves! Please don't panic about the protein in the urine, as it can show up in healthy people who are very active or can be a contaminant from vaginal secretions. I would just ensure that you have had a recent protein/creatinine ratio and UA checked to rule out microscopic hematuria. If either of these is abnormal, I would ask for a nephrology consultation. Please keep us posted.😘
@A MyLupusTeam Member In my experience, it's a combination of continuous monitoring of lupus, knowing our bodies, communicating with our doctors, and getting them to listen to us.
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