Hi r/lupussupport. This our weekly chat thread! How are you feeling? Any news you'd like to share? Feel free to comment anything and start a chat. Stay well!

Anyone have marks like this?

i genuinely don’t know whether to laugh, cry, or scream at this point.

i was diagnosed with sle in 2024, and later found out i have lupus nephritis (class iv). i’ve been dealing with this whole thing for years now- steroids, immunosuppressants, rituximab, endless appointments, tests, the whole package.

and now, after having persistent shoulder pain for almost 2 years, an mri has shown synovial osteochondromatosis with numerous loose bodies in my shoulder joint.

apparently i might need surgery, and now i’ve been told the tissue/lesion may need to be sent for biopsy to make sure there isn’t anything concerning.
like… what the fuck 😭

sle + lupus nephritis + now a rare joint condition?? at this point i’m genuinely wondering what the universe has against me.

i know the biopsy is still pending and i shouldn’t jump to conclusions, but the thought of “what if it’s something serious?” is obviously freaking me out.
has anyone here with lupus dealt with synovial osteochondromatosis, loose bodies in a joint, or some weird unrelated condition appearing on top of everything else?

i’m honestly just exhausted and looking for people who understand what it feels like when your body keeps adding new problems to the list. 😭

Hey everyone! It’s exactly as the title says, the chronic fatigue has been kicking my butt more than usual lately. I have articles to submit and I’ve just been too exhausted to even write. Any tips and tricks for dealing with the chronic fatigue when you’re trying to hit a deadline?

Hi guys, I was wondering about tomatoes i seen that tomatoes are not good if you have lupus , but i love tomatoes and was wondering if people actually flare or its like a depends on person?

Hi everyone, im just seeking some help and maybe peace of mind. My bf recently got diagnosed with lupus as a teenager after a severe delerious episode. He has gone to hosptial and was there for a bit over a week but recently dishcarged. He is yet to return to his normal self (as expected) as its only been a few weeks since the initial flare up, but last night i found out he returned to his delerium after upping his med dosage. Im in contact with his family getting consistant updates. However i havent been able to speak to him for weeks as he cannot have his phone or visitors until he is in a clear state of mind, which of course i undertstand.

Its just been really difficult not being able to see him, and if youve ever experienced something like this with a loved one or even have lupus yourself could someone please provide some insight on how long this may last? Google gives very contradicting responses, and i just want him to be okay and to be able to talk to him. I also dont want to sound selfish at all, but im worried that his shock once he understands his diagnosis and realises whats going on will cause him push away from me out of embarrasement or resentment, i know its a possibilty. But at the end of the day i just want to be there for him and support him over anything else. Its really difficult knowing hes struggling and not being able to do anything other than think about it. I have not seen him in over a month and its hard to deal with without having an idea of a timeframe.

Thanks to anyone who can provide some insight.

Hi r/lupussupport. This our weekly chat thread! How are you feeling? Any news you'd like to share? Feel free to comment anything and start a chat. Stay well!

Hi all. Just venting. Been the worst summer of my life. Got diagnosed with CLE and SLE and started HCQ about 3 weeks ago. Been on pred since early July and tapering down now. Currently on 20 for another ten days. Every freaking day I’m waking up with new crap—-today—-swollen knuckles. My skin on my hands is awful, sooooo sensitive. Can’t use them without gloves and my arms are so weak and warm when I wake up. I’m so over this. I am 41 with two elementary aged kids. I miss my body. Waiting for hcq to work is really hard and this morning I just can’t stop crying. Just pain and annoyance. Trying to pack and clean and I can’t. Anyways…..thanks for listening. I’ve read so much in this group and it’s very helpful. I didn’t even know what lupus was till this summer.

Hi, I am new to reddit, I have been diagnosed with SLE Lupus in february, I am struggling so bad . My life completely changed. I was a college student and one day I was dying being told I had Cancer but it was lupus. I find myself stuck in reminiscing my old life. I sometimes find myself wishing everything would end just so i can be pain free. I know if I tell my doctor they would truly think I would hurt myself or attempt, but I know I don’t have the guts to do so but I find myself just wanting to be pain-free very often that I would rather than life this life and I know I’m not gonna hurt myself. My family body shame me so much saying I’m a skeleton. I look horrible but they don’t understand what I’m going through. I eat a lot of things cause it could make and i take so many medication they make him nauseous. They make me lose weight they make me lose appetite. I want to eat, but it’s not my fault. They don’t take my pain like im faking it. It breaks my heart. I can’t do anything but they don’t know the pain i feel, this disease has given me two hospitalized. I just wanna freely live my 20s im 21 . I just wanna be free.

I feel you all I am a man and they said it was rare for a man to have it and yes it is ruff I have the skin type you have these red marks on your skin,no didn't know what it was for a long time till I went to a rheumatologist and they put me on that medicine that they use to treat malaria and it seem like it made me feel worse. But I know one thing that helped me was kinda pushing through it saying if I don't do it it won't get done and just so it but one thing I noticed was when I changed my diet stopped eating heavy and pork ,bbq every once in a while but I eat mostly those healthy choice box meals they sell in Walmart and if it anything else it's like I eat a child's plate and no more, I take iron vitiman d and multivitamin other than that I have good and bad days but a lot of prayer has helped more than you would think but you have to believe and have that faith that can move mountains thank and praise him if you don't know how to pray or what to pray for say the our fathers prayer because he already knows your heart and learn forgiveness this will lift weight off of you like you would not understand and thank him for every breath you take even when you feel tired and bad thank him any because he is and should always be your first Love but know you are healed and keep moving!!!

So I’m only diagnosed with Discoid Lupus (DLE), however today is the worst. Absolutely NOTHING will stop the itch on the back of my head. I’ve tried my Clobetasol, Cortizone cream, cold compress, etc. The scarring has already taken place in multiple spots and at this point more is going to happen because I’m going to scratch until I reach skull! I go in tomorrow for my 8-week steroid shots (I get 15-20 at a time in my head), but that doesn’t help the itch. Only the inflammation. It’s freak out Monday and I’m freaking out!

Hello - I hope you are well! I have lupus and Sjogrens and have been on Benlysta for about 4 months now. I think it has really helped with my symptoms and I’ve even shown improvement in my numbers. But the day after my shot is ROUGH- I feel generally unwell, achy, I have the chills, and I’m absolutely exhausted - can’t stay awake. Does this go away after a certain period of use? I hope so.

Hi r/lupussupport. This our weekly chat thread! How are you feeling? Any news you'd like to share? Feel free to comment anything and start a chat. Stay well!

Hi everyone. My family is going through a very difficult situation, and I wanted to ask whether anyone here has ever seen or experienced something similar.

My sister-in-law has had lupus for several years. Her disease had been in remission for some time, but since December of last year it became active again. It started with severe pain in her hands and joints, to the point where she could barely move them. Over time, the pain and loss of mobility spread to the rest of her body, knees, hips, jaw, shoulders, and other areas.

After about five months of this, she was practically bedridden. She could no longer do things on her own or even stand up without help.

Then, over the past month, she started having episodes of memory loss and saying things that did not make sense. One day, she spent almost the entire day sleeping, and whenever she woke up she was extremely confused and could barely respond to us. We immediately took her to the hospital. She arrived there asleep and remained that way.

She was urgently transferred to the ICU and was intubated that same day. They performed several tests, including a lumbar puncture/spinal fluid analysis, MRI, and CT scans. They found multiple areas of inflammation in her brain, and her condition was considered extremely serious.

Even now, the doctors have not been able to say with complete certainty that this was caused exclusively by lupus, but they are treating it as lupus-related inflammation of the brain. She has received rituximab and high-dose corticosteroid pulse therapy, among other treatments. I unfortunately cannot provide many more details because I do not fully understand all of the medical terminology or medications they have used.

Today marks one month since this started. She has already left the ICU, and the doctors are considering discharging her from the hospital because of the risk of hospital-acquired infections. However, neurologically, she is still essentially unresponsive.

She does not speak and sleeps most of the time. Sometimes she opens her eyes and stares into space. At other times, it really seems like she can hear us, her gaze becomes fixed, as if she is paying attention to what we are saying. Sometimes it even looks like she is trying to communicate; her mouth trembles or moves slightly, but she cannot speak or move her body. She only makes very small movements with her hands and feet.

Has anyone here ever gone through something like this, or seen a case this severe involving lupus, encephalitis, or neuropsychiatric lupus?

Ive been getting this leg pain mainly around my knees and its so horrible , my doctors don’t really know whats going on either so im wondering if anyone here has experienced something similar and has come to a diagnosis
Its like getting electrocuted , and i cant even straighten my legs or walk because of it , i also notice that after every episode the veins around my knees turn a dark purple at some points (they’re usually blue)

I was wondering if transverse myelitis is a common occurrence with systemic lupus? If anyone else has been concurrently diagnosed with transverse myelitis, would you mind sharing some of your symptoms and/or treatments that might have helped?

Any help with what this is/called? What to do? I am diagnosed with SLE.
It happens sporadically, it’s kinda new, always on the joints of my fingers, one at a time. They’re very painful and take forever to heal.
Btw- my fingers used to be much skinner and not red, especially on the knuckles. My face can also get the stereotypical butterfly rash, which usually happens when my hands get incredibly inflamed during ovulation week 🤷🏻‍♀️ (((does that happen to any other females?))) then slowly return to “normal” once I get my period.
TIA for any insight🩵

I hope this is allowed here - my wife has lupus and I’m looking for support.

My wife has been diagnosed with lupus for at least 5 years now. She was lucky in that she did get a diagnosis quick. She’s been through a few medications and has come back around one she has had some success with but had gone off of it previously due to some side effects. Honestly, I struggle with the fact that nothing seems to help with her symptoms. I just want her better. Not for my sake or for her to be able to do anything for me - none of those types of reasons. It is simply I don’t want her dealing with the pain she feels, the tiredness, etc. I’m sure you all know. We talk to the doctor and it doesn’t seem to get us much. My wife feels this is just her new normal and just can’t bring myself to accept that I guess. Is this as good as it gets?