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Geronimo (@geronimo)

Lupus nephritis

Autoimmune Diseases | Last Active: Mar 7, 2022 | Replies (10)

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@tpriyaleela — I was diagnosed with lupus and lupus nephritis almost simultaneously back in early 2020. I started off on the same regimine you're on, and I'm on the same right now too. I took Benlysta for a few months last summer in addition.

Most of my labs corrected within a year or so. I still have blood in my urine and my eGFR will likely never be above 90. I have some kidney damage, CKD Stage 2, but overall things have improved with my kidneys. I'm struggling with more general lupus/post Covid symptoms these days.

Do you know what class(es) your lupus nephritis is? Do you know which lab numbers are still not improving as much as you had hoped?

I'm here to chat if you ever need someone. It can be lonely and scary sometimes, because I haven't really known what to expect long term. It sounds like many people do get it under control with time and do pretty well long term. I will check out the link for lupus above that @becsbuddy mentioned too!

Hugs to you!

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Replies to "@tpriyaleela -- I was diagnosed with lupus and lupus nephritis almost simultaneously back in early 2020...."

@kssunflower Thank you very much for your response. It's been 6 months since I started this course of medicines. Mine is classified as class IV and class V lupus nephritis. My proteinuria came down a bit and then started increasing again. Right now my protein/creatinine ratio is 2.1 (normal being 0.2). Is this something you have observed too. Of course my doctor said it might take an year for everything to subside but I am worried as it appeared to be getting better last month and this month lab work doesn't look good. Also, blood counts have been dropping too.

Thanks again for your support. Very much appreciated. Wishing you as speedy recovery and strength to cope up with this.

I had Bright’s disease in kindergarten I wonder if it’s related to Alport's syndrome. I was diagnosed with Lupus in 2000. It’s been in remission but I do have some tiny bit of blood in urine. I hope you feel better.