Living with Lupus: Tips and Support

It’s my very first time posting on this forum. I was wondering if anyone here might have some personal experience with using immunoglobulin (Octagam)? Sending my best to Nicole Peterson!

I am 20 years old and was recently diagnosed with lupus. I am wondering—if it is indeed true—that this disease is incurable? Is it possible to manage the condition, and if so, to what extent and through what methods? Thank you in advance for any insights you might share.

There’s already a massive thread about lupus on the forum
Go check it out!

stormypilot52 said:I'm 20 years old and was recently diagnosed with lupus. I want to know if it's true that the disease is incurable—can it be managed, and if so, how much control can you actually have over it? Thanks in advance for any answers.

Look, the disease is incurable, but it’s not quite the apocalypse people make it out to be... You can live with lupus—really live—as long as you actually listen to your doctors. If you stay on top of things, you can lead a pretty normal life, almost like you don't even have it. We have a dedicated "Systemic Lupus" thread here on the forum where you can find just about everything you need to know, or ask your own questions. You'll get some incredibly helpful responses from people who, unfortunately, have more years of experience dealing with our version of the American political circus than they'd like. Hang in there.😉

Hey everyone!

I’m a new member here. I’m 23 and living with SLE. My first symptoms were a weird sun allergy and skin redness, plus a fever and that classic butterfly rash across my nose. Doctors actually had to run a ton of tests because everything looked so much like rheumatoid arthritis—which is what they originally suspected during those first six months. But thanks to staying consistent with my meds—I’m on prednisone and Imuran, which are pretty much the gold standard for treating lupus globally—I’m feeling great today. Honestly, I look pretty good too, even though I’ve picked up some extra diagnoses along the way, like lupus nephritis and Sjögren's syndrome. Sorry if this sounds a bit messy, but if I tried to write this out using all the formal medical terminology, I’d be stuck hunting down my lab reports just to get the exact Latin names right. Hopefully, you guys get what I mean!