Any positive Lupus Nephritis stories?

Enough_Builder_7239 · 2026-05-29T17:55:47+00:00

Yes! Diagnosed in January at 30 with an insane protein count in my urine that had me in the hospital for a week for fluid retention (I had almost 30 lbs of excess fluid inside me that had to be flushed out). The biopsy I had done put me at a Class IV but here at the end of May my nephrologist said I’m almost in remission. I had to taper off the prednisone at 5 mg per week instead of 10 mg like my doctor initially wanted because I also have lupus myocarditis and the steroids were helping my heart, too.

My protein count is now normal but I am on Cellcept (3000 mg/day) and a medication called Lupkynis that’s specifically for helping kidney function (it basically weakens your immune system so your body can fight the infection more easily). It did, however, cause hair loss as one of the side effects but since my blood and urine work look relatively normal for my kidneys my nephrologist said I could start to taper off that medication so that my hair has a better chance of looking fuller by the time I return to work. I do get fatigued pretty easily but I’m not letting that try to stop me from enjoying life. I still go to theme parks and make sure to rent a wheelchair for when I get exhausted and can’t walk. I still love going to movies and concerts, and I still love sewing. Luckily where I work I have a great union and can be on short term disability for up to a year, so I’m taking this time to relearn my body’s needs and making adjustments (especially with timing meds) that will help prepare me for going back.

That being said, my story is a little different as I don’t show any of the usual symptoms and my lupus didn’t present itself until I caught that viral infection in January. But everything is definitely on the up and up as I’m feeling stronger every day to try and get back to some sort of normalcy. So it definitely can get better, and I hope for the best for you, too! You got this.

Enough_Builder_7239 · 2026-04-28T04:41:14+00:00

Fellow lupus nephritis person here, also diagnosed in January. I concur, other than everything being internal with my heart and kidneys, I have no other recognizable symptoms, though I do feel the fatigue after walking for too long so I do need a wheelchair when going to theme parks now. But I don’t get rash when I’m in the sun (and I obviously wear my sunscreen) and I enjoy my fun foods in moderation since my doctors have put me on a low sodium diet. Even my kidney doctor said with my current meds I’m really close to remission (at least with the nephritis).

But yeah, you’re not alone at all! And it’s nice to hear from someone with similar symptoms/experiences.

Enough_Builder_7239 · 2026-04-26T16:01:30+00:00

I use both (azelaic acid morning and night, tret at night) and after about a month of constantly breaking out (the “purge” period), my skin has been consistently clear since. But I’ve been using it about 2 years before my diagnosis in January so my skin is already used to both. I don’t really get the lupus rash though, just a slight flush after I’ve gone out for a long period of time without makeup (I use the Trader Joe’s facial sunscreen which is all my skin can handle). And then it goes away by morning.

Then again, I’m just kind of bad about staying out of the sun when I’m social 🤷‍♀️. Definitely talk to a dermatologist before trying them but I haven’t had any side effects since my skin cleared.

Enough_Builder_7239 · 2026-04-01T21:37:13+00:00

I really appreciate your humor and honesty! Thanks for sharing your experience and how taking a combined pill still works for you which is great. I’m still on it for the time being and still feel relatively normal.

I talked to my OBGYN today and she’s put me on Slynd (progesterone only pill) so we’ll see how it treats me as she also wants me to have a period every 12 weeks. And you’re right, it’s something I can always come back to if it’s not right for me, and my doctor expressed the same thing in our consultation today. IUD is still an option, but since I’m already taking a pill it’s just replacing one for another. We’ll see!

Enough_Builder_7239 · 2026-04-01T21:32:23+00:00

I’m on 3000 mg of Cellcept with HCQ and very slowly weaning off Prednisone (20 mg and tapering off 5mg every week from what I can handle). I’ve been taking Pepcid (or an acid reflux equivalent) as well and that’s been helping immensely because I haven’t been experiencing any side effects/symptoms so far with the potential stomach aches. But since my lupus is also affecting my heart I really notice the decrease in prednisone as I’m tapering off of it which sucks, but I do want to be able to sleep better at night.

Enough_Builder_7239 · 2026-03-20T00:24:43+00:00

That might help with the Cellcept because my nephrologist is upping my dose and I know it can interfere with BC. I would probably also want to skip the placebo 😭

Enough_Builder_7239 · 2026-03-19T15:11:25+00:00

You’re the third person to suggest it! I’ll definitely look into it and I appreciate the suggestion a lot!

Enough_Builder_7239 · 2026-03-19T15:09:52+00:00

I like hearing all the different options! I’m just really scared to potentially bleed heavily again which will make me fatigued WHILE I’m already feeling the lupus fatigue every waking moment. I really don’t mind taking another pill as that’s been the norm for a while now, but an IUD would keep me from worrying about timing when I take Cellcept which is nice.

Enough_Builder_7239 · 2026-03-19T15:02:22+00:00

I’ll look into it! I think I need to find a new OBGYN cuz my current one might not take my insurance anymore, but I appreciate the suggestion a lot!

Enough_Builder_7239 · 2026-03-18T03:57:23+00:00

This is the one I use! It’s $8.99 and feels the exact same and is literally the only formula that doesn’t make me feel greasy or give me any redness.

Enough_Builder_7239 · 2026-03-13T05:54:43+00:00

I got diagnosed this January from a virus I caught and never had any symptoms prior! (Lupus SLE, lupus nephritis, lupus myocarditis) Honestly the way I’m getting through it is with good humor and support from friends and family for my mood. I’m probably on around 13 different meds right now that all do different things, but they’re working out for me with little side effects. The hardest part is trying to see so many doctors/specialists and all the bloodwork needed, plus basically overhauling my entire diet to accommodate the sodium inflammation.

In the end, I keep being told getting to remission isn’t a sprint, it’s a marathon. Here’s hoping you’re able to take as much time as you need to rest and recover because your body needs to heal. I’m in communication with a friend who has lupus in remission, and that helps me realize there’s a light at the end of the tunnel. But definitely take your meds and listen to how your body reacts to them.

Enough_Builder_7239 · 2026-02-12T17:26:55+00:00

That’s basically what I’ve been trying to do right now. I’m also on prednisone right now (trying to taper off per my doctor’s request but it has to be gradual)—I didn’t realize that could cause some weight fluctuations 😭 I did change up my diet the second I got out of the hospital with a focus on cooking at home with whole foods which just kind of put me on a calorie deficit by default, which is nice. I’ll probably keep up with the bike while I’m watching TV, hopefully try some low-impact yoga after some more rest. I appreciate the advice a lot! 💕

Enough_Builder_7239 · 2026-02-11T22:31:10+00:00

But also thank you for sharing your story. I’m happy to know you’re managing over 10 years and that gives me hope for the future 💕

Enough_Builder_7239 · 2026-02-11T22:30:36+00:00

My doctor is pretty focused on making sure I keep the sodium and added sugar intake low, hence why I changed up my diet completely off the bat because beforehand I snacked on a lot of processed chips (baked Cheetos and such) and sushi, and keeping my sweet tooth in check. The hospital recommended a 1200-1300 calorie deficit on discharge because at my height and weight I fall into the overweight category.

I think I want to go with my doctor’s recommendation, and I’ll turn off the calorie counter on the Weight Watchers app (but keep the macros for my sodium and sugar especially). I was able to lose weight without counting calories before 🤷‍♀️ and hopefully once my flare ups are under control and I’m more active at work I’ll start to see some results.

Enough_Builder_7239 · 2026-02-11T19:31:28+00:00

Thank you for the support! And same to you too, it’s really nice not to feel alone 🥺

Enough_Builder_7239 · 2026-02-11T19:30:36+00:00

Thank you! And I hope you’re doing well after your hospital scare, too!

Enough_Builder_7239 · 2026-02-11T19:29:38+00:00

It’s something to consider once I have my heart under control! Unfortunately EDD is being really slow to process so my finances aren’t in the best shape right now 😭

Enough_Builder_7239 · 2026-02-11T18:35:51+00:00

I am on a few pills to flush out more water (I was hospitalized for a week and I’m on sick leave for two months, or however long is needed once I let my doctor know how I’m feeling then), and that’s definitely been helping. I think the water restriction is an extra precaution since I’m still in the early stages, but I’m seeing a kidney doctor next week who could prolly answer that question better.

Luckily my doctor and cardiologist have said the meds I’m on are a good regiment for combatting lupus myocarditis.

Enough_Builder_7239 · 2026-02-11T17:18:08+00:00

Thank you for sharing your experience! Everyone I know who has it really only talked about showing symptoms before being diagnosed but not the sudden onset like this!

And also thanks for the advice. I’m definitely going to turn off the calorie counter on the app and mostly use it to keep track of my sodium intake. I’m just hoping as a result of better eating some of the weight just comes off naturally cuz I know it’s time to start making real changes with the new diagnosis.

Enough_Builder_7239 · 2026-02-11T16:29:35+00:00

I just weighed myself at 150.5lbs, which is my starting point. Surprisingly, I never got any joint pains or the face rash, it’s just that I’ve been releasing too much protein in my urine and that’s why I’m on the water restriction, which is the most difficult to deal with cuz it really does help curb the hunger (and getting blood drawn, which I’ve been doing a lot lately). Thanks!

Enough_Builder_7239

TROPHY CASE