r/lupussupport

Hi everyone,

My wife (29F) was diagnosed with lupus about a month ago, and we're still trying to process everything and understand what our future might look like.

Her blood tests (I think it was anti-dsDNA and other lupus-related antibodies) led to the diagnosis of SLE. After that, the doctors checked her heart, lungs, brain, kidneys, and other organs. Fortunately, everything else looked normal, but they found kidney involvement.

They first noticed it because of protein in her urine. She then did a 24-hour urine collection. The total urine volume was around 3.5 liters, and the test showed 1,298 mg of protein in 24 hours.

Her nephrologist said this confirms kidney involvement, but they need to perform a kidney biopsy to determine exactly how severe the damage is and what class of lupus nephritis she has.

Has anyone here had a similar experience? If so:

What was your 24-hour urine protein level when you were diagnosed?
What did your biopsy end up showing?
How are you doing now?

We live in Turkey, and she has already started treatment:

Mofacept (mycophenolate mofetil, equivalent to CellCept): 2,000 mg/day (500 mg × 2 tablets, twice daily)
Prednol (methylprednisolone): 48 mg/day
Plaquenil (hydroxychloroquine): twice daily

Her doctor told us she has lupus nephritis of moderate severity, but we don't yet know the biopsy class.

One thing we're struggling with is understanding how much this will affect our daily lives. For example, is it still realistic to enjoy summer vacations? Her doctor strongly advised her to avoid sun exposure, and we're wondering how others with lupus manage things like beach holidays, traveling, and spending time outdoors.

We're not looking for medical advice or to replace her doctors—we're just hoping to hear from people who've been through something similar. Any experiences or tips would mean a lot.

Thank you. ❤️

I was diagnosed in 2001, but a few of these symptoms are new to me. I had a really bad flare that started Saturday night, I could feel the butterfly rash coming, it was making my scalp’s hurt and my lips were getting puffy, along with some major brain fog by the end of my shift. Had to call out Sunday because I had a very angry, bright red butterfly rash, it felt as if I’d rolled around in fiberglass and someone poured boiling water down my back. The one that often throws off my husband is when I say my hair hurts. I think something happened when I got COVID a few years ago because I’ve never had a moment where I said my hair hurts before. I went to the hospital in 2021 for possibly the most severe flare since my diagnosis. Now my skin hurts, but I have no hives like I used to get, I still get puffy eyes, lips and fingers, which makes me look like I’m having an allergic reaction. I know that if I had gone to work Sunday, I would have had a breakdown. Wearing my most lightweight nightgown was painful and I know wearing a t-shirt and the vest I have to wear would’ve been more painful. Add to that the lack of energy, it would’ve been very obvious to my managers and maybe some customers just how bad I was feeling. I have a lot of regulars who are used to a very bubbly person, when I’m in pain, I get very quiet.

Hi All,
I have had lupus and sjogrens 30yrs. I’m in a flare with pain when I breathe. I also having this very weird symptom, it feels like I am getting bit by deer flies. There are no bite marks it is definitely not bugs. Has anyone had this? I’m on a biological medication (Saphnelo) and plaquinil. Please share if you have experienced this and if any meds or treatments helped.

Hi everyone,
I have lupus and I’ve been struggling with constant fatigue, insomnia, and migraines. Even when I’m exhausted, I don’t sleep well, and I wake up feeling like I have no energy.
I’m wondering:
Has going for daily walks helped your lupus symptoms or fatigue?
How do you manage insomnia?
What has helped with lupus-related migraines?

I’d really appreciate hearing about your experiences. Thank you!

I have been diagnosed lupus 2 1/2 years have tried several medication‘s, and my body rejects all of them. I don’t have the proper enzymes apparently.

Rheumatologist could no longer help me so I saw a naturopath. Put me on Boswell, ginger, and turmeric to help with inflammation, DHEA to help with flares and joint pain (because my ankles and fingers feel like they’re on fire since stopping the medication.)
Monolaurine/lysine to help with the chronic mouth sores (Which has been a blessing & a godsend all in itself. ) Mega food all in one vitamin, methyl folate, which has B9 and B12 in it, saffron and l-theanine to help with anxiety from this and help me sleep. Berberine to help with blood sugar.

Been doing this about six months and all the chronic symptoms that led me to get tested for lupus initially , are coming back and again, I cannot take synthetic medications.

Does anybody have any supplements that have been the game changer for them?

Thank you so much for your input, I’m in a lot of pain and feeling pretty helpless. 🙈

Hello my fellow butterfly fighters! I hope that you are doing well. Or as well as can be expected.

Over the years I have been encouraged by so many to start a vlog chronicling my day to day life living with lupus, but I haven't done it. However, now im thinking I should give it a go. And ive been thinking that as part of it i should interview others who have had their own fight. And maybe even medical professionals and family members involved in the fight with us.

What do you think? Would it worth trying? Would you follow it? Does it sound interesting?

Has anyone experienced hair loss from lupus? For the moment my hair is thinning and falling off when brushing and combing. I don’t know if it will get worse.

Hi ana-buddies :)

So, I was diagnosed with lupus in 2015 (for a second time-- the first being in Florida in 2013 so I had to start from scratch here). It's well documented, from my myChart listing it as one of my health conditions, on top of YEARS of bloodwork with anti-smith and anti-ccp antibodies coming up positive (so SLE & RA). I've always been a frequent flyer at the doctor; not because i want to, obviously.

But I found out the other day that my husband told our stepson that I just "self diagnose" and that I'm not really sick.

This is a man who claims to be Christian, is incredibly conservative, and literally thinks most of medicine/big pharma is a scam. His views on medicine make me sick. (***he was not like this when we met OR bred). The man has never, in a decade, taken the time to even Google what lupus is (or one of the 10 other conditions I've got). He won't touch any books i buy for him, read any articles, listen to any podcasts... so he LITERALLY does not understand what I'm going through in the slightest. And with that comes a complete lack of empathy, unrealistic expectations, and constant fighting and disappointment on both ends.

My question is... has anyone else had a spouse who was like, in denial about your condition(s)?

I dont know what to do at this point -- going to PT twice a week and living at my ortho office is a GIANT burden to him, nevermind when I'm hospitalized and interrupt his work life. I am a burden. That is VERY clear. Even if he doesn't mean it maliciously, the ignorance is detrimental.

How do I get this man to open his eyes, or even want to? Do i? Should i just take my kids and run away to Sweden or?

Haaaaalllllpppp 😭

Hello y'all!

I am currently waiting on a hearing decision from a low approval judge (15%). I was wondering if any of you were approved for any of these or multiple things. Lupus SLE, fibromyalgia, arthritis in back L5-S1, and severe anxiety. My hearing was on June 4th.

It would be so appreciated any information or advice given. Any blue book qualifications etc.

Hi guys!

How fast can your potassium shoot from solidly normal to low? Two weeks ago mine was 4.4. But I feel like it has tanked.

Fyi, I have a LONG HISTORY of low potassium requiring the infusion from Hell. It sucks and, well, its it feels like someone is infusiing me with a hot ice pick when they do it.

I’m disabled with lupus/Sjögren’s/UCTD — and I’m trying to figure out how people realistically get by on disability? Does anyone have any advice? Thank you!