Hi. So I hav3 1:320 speckled ANA , and dsDNA binding autoantibody is abnormal, this have been sent to rheumatology to seek an SLE diagnosis.

Admittedly I'm worried as I don't know what to expect from my first appointment. What sort of tests do they run? Will they check my weight or will that be unnecessary?

I appreciate any advice, experiences and anything else.

Thank you.

I was diagnosed with lupus but I never learned what type. Is this normal for other people? I’ll eventually move to Texas to get a more specific diagnosis. My mom thinks it’s skin lupus but she doesn’t know anything about it.

At some point I tried to figure out what the differences between the different types are. There were sources saying skin lupus could affect other organs too so I don’t even know if there is a genuine difference

Met with a Rheumatologist the other day for the first time. I've had a few positive ANA tests in the past and my doctor never said I need to too anything. After speaking to a few people and telling them some things that have been going on with me over the last year, they recommended I see a rheumatologist, especially after having multiple positive ANA tests.

She ordered for a bunch of blood work to be done, and to do a week of prednisone to test for Lupus. She said if I feel better then it is without a doubt Lupus.

Prednisone scares me or at the the very least makes me very leary. Is is this a standard was to help diagnose Lupus. I know there is no one test. Thanks for any info!!

Blood tests came back with

Low WBC 2.5 (usually low)

Absolute Neutrophils 1,050

C-reactive protein 0.5

Leukocyte Esterase Trace Abnormal

Hello everyone,

My name is Cali Boustani - I’m a Master's student in Biotechnology at Brown University.

Due to watching my mother battle rare disease and pain growing up, I am currently working on a project that aims to build science backed solutions and improve the quality of life for individuals experiencing chronic pain.

I am reaching out here with the hopes to learn from any of you that would be willing to talk with me. Your experience in managing lupis will help guide me on how to best help you. If you are willing to share your story and discuss the obstacles you encounter with pain management, I would love to talk to you.

To schedule a time to chat, please DM me. Hope to hear from you soon.

I finally have my Rheumatology appointment this Friday morning. I really hope it goes well. I cant tolerate this everyday pain anymore. Its so exhausting, I feel like I cant do anything that I used to enjoy. My back is constantly twitching, the pain never stops. It gets so bad it makes me light headed and almost pass out. So many more symptoms, so many to list. I just hope I can get some sort of relief after my appointment. I cant take this pain anymore.

I'm not sure if this is the right forum to ask this, but I am curious to understand the ENA panel and how to read it. The panel includes Jo-1, Ribonucleoprotein, SCL-70, Smith, Sjogrens Syndrome-A, and Sjogrens Syndrome-B.

I was wondering which autoimmune diseases do these tests correspond to? Also, what numerical range is associated with a given disease condition (for example, lupus, sjogrens, etc.) on these different tests? (If you have a link to a published paper that answers these questions, that would be great too.)

Hi all! Check out this website page that shares information about lupus and ongoing research. You can also find additional resources for support and become a subscriber for monthly email updates!

https://www.patientwing.com/conditions-and-diseases/lupus

So I have had a rash that has appeared a few years back. It looks the perfect shape of the butterfly rash and appears with food or stress. When it appears I feel flushed, sick, dizzy and tired. It usually lasts 30 mins to an hour. I was tested for food allergies but negative results on that. I have new pains in my joints all the time that the doctors can never find what caused them. I'm tired all the time and can pass out in the blink of an eye when I lay down. I have cysts on my kidneys and scaring. I also keep developing ulcers in my stomach. This past year I have developed a mass sensitivity to cold on my fingers to where grocery shopping in the frozen sections are painful. I may have forgot something but does this sound familiar to anyone?.. should I investigate the possibility of lupus? Thanks

I've been experiencing this for least 7 years. This is today. I've been experiencing full body muscle and joint aches the past few days. My face gets really hot! I do have some other medical issues. Adenomyosis, endometriosis (only ultrasound confirmed by specialist), degenerative disc disease (pretty bad for only being 39). Lupus was something I suspected in the beginning. Sun sensitivity, mottled netting looking skin, blue lower legs and hands, sometimes lips. I did get CRP, ESR, ANA tested once. All came back normal at the time. I don't know if I was going through a "flare" at the time of testing, I don't think so. I asked my doctor about about the face rash, ready to show her pictures, but she dismissed me at the time and told m not to worry about my face. I haven't asked about it again since. And then years later I find the other medical issues. Anyways, thanks for reading, and any insight anyone shares!

I have a question.... my daughter is about to get married in the next year and her insurance will change. We beleive she has Lupus and we are afraid to pursue a dianosis. We are worried if she gets diagnosed now, when she switches insurances it will be considered a "pre-existing condition". Should we wait to pursue a diagnosis? Will her new insurance cover her?

So my results are in and I’ve officially been diagnosed with Lupus, no clue what kind, and no idea what the next steps are. I was just sent a message in my patient portal telling me I had it and to schedule a doctors appointment with my PCP soon. Can someone please help me understand it more? I know pain is involved, but I also have Fibromyalgia so that’s nothing new. Other than that I know NOTHING. I know it varies person to person, but ANY insight is greatly appreciated! Any diets that might help manage it more like going vegetarian or something? Literally ANYTHING will help!

ETA: I’m a 22yr old trans man, dunno if that’s important

Hi Everyone I myself as a lupus patients is developing a prototype which can help everyone of us, so to help me can some of you tell me about the common problems you may face which I can include in the prototype for instance I've already included a symptom tracker, a medication reminder and curated health resources. If anyone have any other suggestions please let me know

Hi all I just had a ANA blood test and it came back positive with a titer of 1:160 what does this all mean? I don’t see my dr that ordered the test (neurologist) until next month

Spanish speakers with lupus

Hi I'm looking for Spanish speakers participants with lupus for a very short interview. It pays $25 for 5 min of your time. This type of interview is called linguistic validation and it is very simple. Please let know if you or someone you know might be interested.

Hi all!

Do you have Cutaneous Lupus Erythematosus (CLE)?

Clinical Outcomes Solutions, a healthcare research company, is conducting research into CLE

through an exciting in-person study.

Eligible participants will be compensated for time and effort with 100USD.

You may be eligible if:

• Be 18 years of age or older

• Have a clinical diagnosis of active and severe CLE

• Able and willing to take part in 60min telephone interview.

• Not participating in an interventional study on the dates of our study, listed

above

• Don’t have active neuropsychiatric SLE

This research is confidential. Any contact information you provide will only be used for the

purposes of compensation and interview scheduling.

Please contact us at j.rodriguez@medicysltd.co.uk

Hello has anyone been pregnant while on a biologic? Saphnelo or Benlysta?

I had strep and COVID at the same time back in mid-April. Now I have both at the same time AGAIN. 😭

I haven’t been diagnosed with lupus, but my rheumatologist says I’m on “lupus watch.” (I’ve been meeting with him every six months as symptoms progress.) I’m curious if recurring infections like these are common for anyone else with (untreated) autoimmune disease?

The board says it was set to private. I'm pretty sure I was a member I posted once before. I wasnt rude or anything!. I wanted to ask for advice / support about trying to get workplace accommodations so I can keep my job...

Is this group active? It appears that it is not. Of course I just was at the doctor (oh I have been so many times the last few years). I had a thermogram and have a lot of inflammation. It had suggested raynauds (sp) and when I looked into that it said 1 in 3 with lupus have that condition. I have some symptoms…red face,rashes, headaches, memory, confusion, kidney issues. Idk. Just something I will bring up with the doctor. Goodness.

Hello all.

Have you (like I) ever done a clinical trial with experimental drug? If yes, in what country? Did you get anything out of it?

Best, Charlotta

Hello... I’m Sriya, a communication designer and a lupus warrior from India. I’m working on raising awareness of autoimmune disorders for my graduation project and I want to talk to as many warriors as possible and know your story and struggles. Please reply if you are interested in a short interview. Will not take more than 10 minutes of your time. It’ll help me a lot... Thank you.

Hi guys! My results to my blood tests are here and I begin to panic. I have Anti-dsDNA positive, Anti-Ro52 positive and Histone equivocal. Those are enough to diagnose lupus? Was anyone else in this situation?