u/Independent_Half2981

I feel like someone asks at least once a month lol but I always like these posts. I have tried ALOT of sunscreens yall, but I have yet to find a like go to facial mist for reapplying over makeup that works good.

I tried the coola mist (the mist is too powerful & greasy); sunbum mist leaves little dots, the elf makeup one is my current one since it's okay but it messes up my makeup ironically. The one/size mist by patrick starr legit is like hairspray and makes me feel like I have asthma LOL. The kopari body spray spf 30 mist is okay but I don't think it's meant for the face :/

Side note can we talk about how Rare beauty hardly has any SPF options? Like I love my girl Selena Gomez but sis .... if you were inspired to make the products easy to open because of your lupus WHY do you not have more SPF EVERYTHING ugh, or is that not weird to anyone?

Any updates or have y'all found any good ones yet?

Hi!

Background relatively newly diagnosed UCTD in august and my Rheumatologist amended my diagnosis to SLE which I know is common but I get confused telling people how long I’ve had lupus lol.

Is it from when it was amended to SLE in January or basically from the UCTD diagnosis?

At first my rheum kept telling me I was a half sneeze away, but he didn’t realize some of the other symptoms I had since I thought he just knew & amended my diagnosis. Then was told mild type but I wasn’t able to taper off 10mg prednisone without flaring, & Mtx wasn’t doing it so switch to Benlysta but since he thought I was milder, no biggie just stop Mtx and it all works. Yeah well unfortunately 2 weeks later boom I was in the hospital lol w/ NPSLE which was scary, horrible but because of it we added Cellcept after a pulse and taper and I have been feeling amazing!!!! some symptoms here & there but nothing new thank god and I am literally able to function again.

So my question, is I’m confused about organ involvement and also hopeful yall can give me some insight or personal experiences but … am I good for now???

This was pretty recent btw like hospital 2 months ago, I have been worried about kidney involvement since I’m “high risk” and ik lupus is unpredictable.

My labs have been great upcr, bun, creatinine, protein, and my UA’s have been like weird but no protein. My GFR has fluctuated a lot during flares but nothing crazy like 126 was baseline then it was 95-92-90 for a few which had me sus but last blood work it’s 106 so thats good.

My BUN also has been all over the place, 12 then to 22 and 19. I know hydration affects it but also idk if I’m being too chill or if I should overthink a bit. I had periods on/off of bubbles in my pee but my labs were great so I just shrugged it off but recently starting to notice more and more frequently… but I’m telling myself there’s no way, right? I have noticed more puffiness/swelling in my face, feet and hands but like not consistently so I’m chalking it up to salt or prednisone (I’m on a low dose). My CMP is literally always messed up somehow, my potassium will be low randomly or my sodium and glucose which is just weird but it’s literally always off somehow and each time I focus on eating more of whatever is low 🤣

It already affects my skin, joints, blood vessels, cns/pns and unfortunately got to my ovaries (which didnt even know was a thing but in case yall didnt know). Sry it’s lengthy but let me know if you are in a similar boat and if this is possible??? What were your signs that you shrugged off or when did you realize this might be nephritis before asking your doc? If I just had it affecting one major system can Lupus go somewhere else even when I’m feeling a lot better???