r/lupussupport

Hey everyone,

I’m a 42-year-old male and was diagnosed with discoid lupus about a month ago after dealing with worsening scalp issues for a while. Right now the biggest problems are:

Scarring hair loss on my scalp
Absolutely insane itching/burning sensations
Lesions that still seem to be spreading despite treatment

My dermatologist currently has me on Plaquenil (hydroxychloroquine) and clobetasol, and I’m scheduled to start steroid injections every 8 weeks. I know these medications can take time to work, but the itching is driving me crazy and affecting my sleep and concentration pretty badly. For anyone who’s dealt with discoid lupus, especially scalp involvement:

Did anything help calm the itching?
Any shampoos, moisturizers, cooling products, or routines that helped?
Did Plaquenil eventually slow the spread for you?
Anything you wish you knew early on after diagnosis?

I’ve had a buzz cut for 20 years, so honestly I’m less worried about the hair loss. I’ve got a six-head anyway, so nature was already winning that battle. Appreciate any advice or experiences you’re willing to share.

I’ve noticed that I’m waking up with my hands balled up and my arms across my chest.
I’m sure many start the day with joint pain as well. Are you aware of your body coping like this as well?
Flares are getting worse 😩

Hi everyone. I’m newly diagnosed with stage 3 PILC breast cancer and about to start aggressive chemo/radiation treatment. I also have lupus, and I’m honestly anxious about how treatment might affect autoimmune symptoms and flares.

I was hoping to hear from other women with lupus who have gone through breast cancer treatment. How did your lupus behave during chemo/radiation? Did symptoms improve, flare, or change in unexpected ways? Were there certain treatments that were especially hard on you? Anything you wish you had known beforehand?
I know everyone is different, but hearing real experiences from people who understand both lupus and cancer would mean a lot right now. My lupus has been well managed for the past 6+ months and I’m nervous about what happens now. Thanks 🙏 and 💜

My fiance was recently diagnosed with lupus and is having a really bad flair up. What can I, as a caregiver, do to help keep her comfortable? Any advice is appreciated. Tyia

Hello everyone! This is my second time posting here and feel safe enough to ask about this. I’m a 16F who is 260 lbs and want a diet that wont send my body into a flare. Any good foods/ ingredients that can benefit Lupus or not affect it negativity?

I think it’s good to mention that ive been on iv steroids (1000 mgs but recently went down to 500) and constantly feel hungry. We’ve tried talking to a nutrition but it didn’t work out; I think she thought I was developing an ED and avoided restricting me things?

I’m pretty flexible with food so any suggestions would be nice!

I’ve been on plaquenil for a little over 6 months and everything was fine. It was working well. But now I’m starting to get flares again. Not that it stopped completely but it wasn’t as frequent and painful. Been seeing large bruises lately all over my legs. I’ve always bruised easily but nothing crazy like how it is now. Also been getting GI issues all of a sudden 😭

Another note I saw 2 rheumatologists, the first one said I had “pre-lupus” whatever that is. Basically I have symptoms of lupus and have a high ANA but I don’t reach all of the benchmarks yet. The second one I saw refused to call it lupus and thinks I just have high inflammation so no idea

Ahojte,
chcem sa opytat, ci mate niekto skusenosti s krabickovymi dietami v Bratislave a viete pripadne nejaku odporucit a preco. Jednalo by sa o dietu pre pacienta s lupusom, ktory je momentalne velmi zoslabnuty a riadne stratil na vahe. Berie kortikoidy a lieky na riedenie krvi.
Cize ak by ste mali skusenost aj s tymto, dajte vediet, prosim.

Dakujem.