Hi everyone, I am new to this group. I was diagnosed with lupus 7 years ago and now 6 months back it turned to lupus nephritis. Now I am on cellcept, prednisone, hydroxychloroquine. May I know if anyone is on the same boat and how long did it take for you to go into remission. My blood work has been going up and down and not consistently improving.
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@tpriyaleela , hello and welcome to Connect. You’ve had lupus for about 7 years, but now your kidneys are inflamed. It must be so difficult for you. I put a link to a discussion where many people are talking about lupus:
Has your doctor been closely monitoring the prednisone use? It can make you feel great but it can also be dangerous to your bones and eyes. I was on high doses—60mg—of prednisone and no one paid close attention so now i have osteoporosis and just had cataract surgery. This is not to scare you, but to get you to ask for a referral to an endocrinologist and opthamologist. Being your own advocate is so important!! Do you think you can ask for the referrals?
@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!
Thank you very much for your response. Yes, my doctor is keeping an eye on the steroid dose. He is referring me to the necessary specialists on a timely basis.
@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 have the class IV and V too.
My lab numbers have fluctuated month to month some too. One time when the protein went up quite a bit unexpectedly, my nephrologist put me on an ARB (angiotensin receptor blocker). It seemed to help a lot with the protein and with my suddenly very high cholesterol too. I am off it now, and thankfully don't have measurable protein in my urine.
Each person is so unique. What worked for me might not be best for you. I hope your numbers improve. I had a few months in a row where everything seemed to be going the wrong way, and then things got better without any reason that i could tell. My doctors were more calm about it all than I was. It's important to talk to them when we have concerns, I think.
Have your overall lupus symptoms gotten better over time? Mine can still be fairly disabling.
May you have strength to cope each day too.
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.
Glomerulonephritis (GN) used to be called Bright's disease and is sometimes referred to as nephritis. Alport syndrome is a disease that damages the tiny blood vessels in your kidneys. Alport syndrome causes damage to your kidneys by attacking the glomeruli.
Have you received a further diagnosis of Alport's syndrome?
Hi Coleen thanks I have not received any diagnosis of Alport I just thought that maybe the basement syndrome may be why the urine has tiny bit of blood. I think Lupus is hereditary. I just know that it’s different for everyone. I did have a double stranded dna test in 2000.
Coleen I was hospitalized in kindergarten after strep was not treated with antibiotics. Then they kept me for what seemed like long time. I think maybe it was Lupus. Glomer sp? I had very bad pneumonia in 2000 and that was when I was diagnosed with Lupus. It’s something that seems connected. My grandmother paternal was not well she must have had Lupus. Poor thing. She suffered so much with steroids. Thanks Coleen they all seem kind of connected
Thank you @kssunflower. My doctor is planning to add something else to my current treatment regimen something like ARB or other new treatment options available. Fingers crossed and just hoping for everything to be normal soon. Thanks again for all your support.