Getting diagnosed with SLE : Has anyone been diagnosed and not had organ involvement?

[Penelope-Pipin]

I finally got to see the rheumatologist yesterday, after 8 months of waiting. I had seen the dermatologist but, they weren’t sure what was going on.

Anyway the rheumatologist is certain I have SLE (I asked specifically which type of Lupus he thought I had ).

I think mine is early enough to hopefully not have organ involvement, when I see him in October, he says we’ll work out a treatment plan, obviously I am still processing it all.

Just wanted to know if anyone with SLE has been fine with treatment and had no organ involvement ?

[SleepyWolf]

Hello. I was diagnosed with SLE four years ago and have been on hydroxychloroquine since then. I've had a couple of (heart) investigations due to frequent breathlessness, but no organ involvement has been detected. Best wishes x

[crazymoon]

Hi, not everyone gets organ involvement and not everyone has to take drugs to manage their condition. I tried drugs at the start but didn't get on with them very well so for the past 7 years I have been managing my condition without them. It is possible.I just eat a very healthy diet, get plenty or rest etc....and take vitamin D which my doctor prescribed. It apparently helps calm inflammation down...

As for organ involvement, the only thing I have had is slightly reduced kidney function at the start - and a couple of episodes of 'suspected' pericarditis, which again was managed without drugs. It all depends on how old you are and your health status generally. Try to be positive!

[Penelope-Pipin in reply to crazymoon]

Thank you just really curious about it all. I’m 27 and would like to think I generally lead an active healthy lifestyle as is. I’ve been a ballet dancer and I guess the thought of possibly getting really sick is scary. But I hardly drink, I am on a vegan diet (have been for 5 years) and I’m a Pilates instructor so I exercise daily .

[Roarah]

Skin is our largest organ so issues with skin plus positive antibodies would usually lead to diagnosis and treatment. No antibodies make it harder to meet criteria and often need evidence like organ damage to hit the magic number to receive a diagnosis. Hope you find a treatment that helps you.

[MrsMarigold]

Hello Pen-P. I was undiagnosed for way too many years until 2016. I definitely have SLEAnd manage it with plaquenil, low dose prednisone, good diet, no sun, lots of sleep and I have no organ involvement. My Rheumatologist told me it is absolutely

Possible to have SLE and never develop organ involvement. One day at a time!

Best, Titters

[Roanna]

Hey Penelope-PipinHappy you got a diagnosis, many don't. I've had lupus for 38 years now and lived a very athletic life prior, and pretty active till today. Stress management is a big one to help limit your flares. I've read somewhere that a lot of SLE people get kidney involvement after five years, me being one. I wish at the beginning of my diagnosis that they knew more about the illness as I was told I would never use my hands again. They were wrong! If I were diagnosed today, it would be so different. Keep looking after yourself like you are and live your dreams, just listen to your body. You will have good days and bad days, but push forward one day at a time. I'm more active than people that have no illness. It doesn't have to define you.

All the best.

🤗