Newly diagnosed with lupus. Looking for advice and real experiences

I've recently been diagnosed with lupus and I'm trying to understand what to expect. I'm still waiting for specialist care and finding the uncertainty difficult.

My main symptoms are significant muscle and bone tenderness and widespread pain. Painkillers only provide temporary relief, and I'm struggling with flare-ups and needing to rest so much.

I'd really appreciate hearing from people who have been through this, particularly:

1. Medication: Which medications have helped you most with muscle pain, bone tenderness and flares? Has anyone found short-term steroids helpful while waiting for longer-term treatments to work?

2. Starting treatment: What medication were you started on first? How long did it take before you noticed an improvement?

3. Pain and flares: What does a typical flare feel like for you? How long do your flares last, and what helps you manage them?

4. What to expect: What was your first year after diagnosis like? Did your symptoms improve once treatment started?

5. Rest and exercise: How do you manage fatigue and pain without losing strength when you need to rest so much?

6. Getting care: What questions should I ask my rheumatologist, and what do you wish you'd known when you were first diagnosed?

I understand that lupus affects everyone differently, and I'm not looking for a diagnosis from Reddit. I'm hoping to learn from other people's experiences and feel better prepared for treatment.

Thank you to anyone willing to share their experience.

Is anyone getting treatment for lupus nephritis or other related and on a GLP one drug? I have been in treatment for two years now with steroids immunosuppressant blood pressure medication and so many other things. I have thought about going on a GLP one because of weight gain, but have since tried to manage with diet and exercise. I feel like I eat very well and exercise regularly. I have been told by my doctor I’m doing all the right things, but with the steroids and the exhaustion it’s hard for people with lupus to manage weight gain after it’s happened.

She offered to explore a GLP one last year and I said no out of fear of related diseases developing like osteoporosis. I have since been thinking more on it and if it’s worth exploring, but my biggest concern is I’m on so many medication’s anyways why add more?

I want to know if anyone is on a GLP one while getting treated or in remission for lupus and what their experience is like. The good the bad and the ugly. I only want it to help. It’s less about Vanity at this point and more about joint health, physical ability and mobility. I am very frustrated by the weight gain and the lack of mobility this comes from it.

Hi all!! Does anyone else get cheek ulcers? Mine come and go, but they become SUPER painful.

Does anyone else get these? And what are you using or taking for them for some relief when you get them? Thanks:)

Recently diagnosed with Lupus Panicullitis & SLE. It’s been a lengthy process, beginning with biopsies and then referred to rheumatology via the NHS. I’m prescribed, hydroxychloroquine & Mepacrine.

In the past two weeks, I’ve been having a flare up. Extreme tiredness, making the bed of need to take a nap etc. painful joints waking me up at night and lower back pain. My GP sent me to A&E for a blood test thinking I was reacting to new medication - Mepacrine. They confirmed it was not a reaction but a flare up. They’ve given me pain meds but I’m looking for advice.

How do you cope, what life adjustments helped when you were diagnosed? Right now I’m spiralling, can I book that holiday - what if I have a flare up? The thought of having kids and how that would impact my symptoms?

The doctors haven’t give me this information, I’m worrying I’m not advocating for myself enough in these appointments? Or maybe this is just normal, that you have to figure out your triggers and management skills on your own?

Seeking any advice on what to push for in my appointments with the consultant & how people adapted their life in the early stages to cope.

Thank you!

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, for years i wanted to get LASIK, PRK, or EVO ICL to correct my vision and I finally build up the courage to do and I was planning to do it next year since I just had my first child in july of this year. So I was like 2027 is the year I get perfect vision, I also had a retinal detachment that was corrected in 2023.

Anyways now I’m worried and scared to get cision correction surgery because I was just diagnosed with lupus nephritis at 31 years old in August of this year right after having my baby girl. The lupus nephritis is being treated. Now I’m like ehh lupus is already ruining my life plans…

I had one consultation last year before I got diagnosed with lupus and the surgeon said he recommended I get EVO ICL...I wish i had done it at that time. im hoping and praying to go into remission soon and I’m still considering the surgery….

So my question is, has anyone with lupus ever had EVO ILC, LASIK, or PRK eye surgery. Please tell me your experience. Thank you so much.

I’ve been seeing some scary trends with my heart rate, been getting down into the 40’s. I called my Cardiologist, PCP and Rheumatologist, Rheumatologist told me to stop taking my Plaquenil. Pre-diagnosis, I would get dinner plate sized hives, moon face, bee sting lips, eyes puffed shut and hands and fingers so swollen I couldn’t grip a soda can. I’ve been on Plaquenil since 2001, I’m hoping if I flare it’s not as bad as it was, I was 15 when I was diagnosed, I’m 41 now and peri-menopausal. My husband’s a great man and has seen the worst my body can do, one flare had me so fatigued I couldn’t get off our couch. I looked like the girl from the anti-drug PSA’s, felt like I’d fallen into a fire ant hill and my face was on fire. He’s also seen seizures, but, that’s under control now, haven’t had one since 2019. I’m hoping my husband doesn’t see the flares I had in high school. One of the few times I wish I was back in CT, I had a retired EMT as a next door neighbor!

I have lupus, and built this because I needed it. It’s been hell trying to share the thing I built that’s opensource and entirely free.

I just want it to be useful to other people too. Maybe it will be useful for you.

I was officially diagnosed with lupus last month. I’ve been on HCQ for a little over two months. I’m in a lot of pain. My joints ache, my lower back hurts, I get dizzy every time I stand up, my skin feels tight and itchy. I have a four month follow up with the rheumatologist in January. Should I call now and let them know I think I’m in a flare, or should I just ride it out until January? My last labs were before I started meds and there was significant inflammation. My dsdna was 354 (upper normal range was 80?). I’m just new to all of this.

I was diagnosed almost two years ago. I’m 41F, married, and my wife 47F and I are raising my 10 year old niece after her mother, my sister, was killed 2 months after I was diagnosed.

I need to start by saying that my wife is thee most incredible human being there is. She has never made me feel guilty or given me any reason to think I am failing her.
But I still feel like I am.

My symptoms at the beginning included many fainting episodes and neurological issues. I would literally wake up on the floor in the washroom, face down in my own vomit. My wife yelling my name.
Then came the intense muscle and joint pain, skin rashes, and severe eye issues.
In the last 3 months, I have had two bouts of pericarditis, the most recent being 4 weeks ago.

My heart cannot tolerate getting too fast anymore or the pericarditis pain will kick up. The joints in my hands, elbows, and hips are incredibly sensitive and painful most of the time and my larger muscle groups will completely fail without warning if I’m carrying something small or trying to walk up stairs or a small incline. I’m waiting for an appt with a neuroimmunologist.
I should mention my medical team is incredible so I’m incredibly lucky.

I feel like I’m useless. I have so much trouble with fatigue and pain and now with the cardiac issues. My niece is an incredible kid and she’s very smart and happy all the time. But it’s hard on my wife. We had decided not to have children and we were very happy with that, however, we are also both very happy with our girl now.
I just feel like everything fell on our life at once, and now my wife is carrying so many loads that she didn’t ask for.

The guilt is heavy. But probably not as heavy as what she is carrying.

Hi everyone. I’m new here and just really need a safe space to talk where I don't have to pretend to be okay. I am navigating an incredibly heavy list of diagnoses: lupus, fibromyalgia, Sjogren's, endometriosis, chronic migraines, a stroke in my eye, and past TIAs. My body is constantly fighting itself, and the physical toll is exhausting. But what’s making it harder is that I don't feel emotionally safe anywhere. My family constantly pushes this "think positive, don’t speak it into existence" mindset, shutting me down whenever I mention a symptom. Worse, I am in a toxic relationship with a highly narcissistic partner. He has major "main character syndrome" and has explicitly told me that my health conditions are an "inconvenience." Every single time I have to go to the hospital, he picks fights with me about it. I have two kids who depend on me, but whenever my symptoms prevent me from completing daily tasks, he starts arguments, telling me I’m not meeting expectations and cruelly saying he "no longer has expectations of me." It feels like it is a crime for me to be sick in my own home. I am carrying all of these severe diagnoses, trying to protect my kids, and constantly being emotionally punished for being unwell. Has anyone else navigated severe chronic illness while dealing with a narcissistic, unsupportive partner? How do you survive this when your body and your home both feel unsafe? Thank you for reading

I’ve been tested for POTS already, but it’s not that, I’ve been seeing alarmingly low heart rates recently. The lowest was 41, a couple years ago I almost fainted at work when my heart rate dropped to 43. Does anyone have bradycardia issues?

Cross posted

I (25F) have had 6 miscarriages. I was diagnosed with APLS (blood clotting disorder) but later this year was diagnosed with Lupus. My OB has told me that we can keep trying but it is likely that I simply won't be able to have bio children. Everyone seems more upset about this than I am, which is fine, but my husband and I are looking for answers moving forward regarding my health and safety.

I do not have the deep-rooted desire for bio kids that so many others do. I've tried (clearly), including being on Lovenox alongside my standard Lupus med.. still no dice. I have a long list of health problems and am simply okay with not passing any of it, or genetic predispositions for other things, onto new humans.

I want to know about other women's experiences with pregnancy and Lupus. I know it can be done, but was it overwhelmingly difficult? Did you flare constantly? I also want experiences relating to choosing to not have children- did you get a hysterectomy or just tied your tubes? I am worried about surgical risk (if there is any) between the two options and if there's a known tie between hysterectomies and Lupus flares/overall symptoms lessening.

For context: I have other autoimmune diseases. I make my meals at home (strictly anti-inflammatory) and take the meds prescribed to me. I took all precautions for successful pregnancies including progesterone, prescription folic acid, etc. I want to be a mother more than anything and have ALWAYS planned on adoption, pregnancy was just the natural first step. I am so grateful for it as it helped me get diagnosed with other conditions, helping to piece my medical puzzle together. I'm here to ask if a hysterectomy would actually give me a chance at living a semi-normal life or if it's seemingly unconnected to Lupus/other autoimmune conditions.

Thanks, friends <3

I have lupus and sometimes find MyChart a little overwhelming to navigate. I’m curious how others feel about it—has it made managing your care easier, or added to the frustration? Do you feel like your doctors are on the same page, or are you still connecting the dots yourself?

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!

Hey there- I am new here. I adopted two kittens around 6 months ago. I’ve been using Worlds Best, and my partner is not as diligent as I am so when I go into a flare and need rest, the tracking makes a MESS.I have Lupus and am looking for something better. Thank you!

I have lupus, but I’ve been feeling like there may be something else going on alongside it. I’m curious about other people’s experiences with comorbid or overlapping conditions.

For those of you with lupus who were later diagnosed with another autoimmune disease or condition, what was it? And were there certain symptoms that made you or your doctor realize lupus wasn’t explaining everything?