This is a weekly thread for those who haven't been diagnosed, but still have questions about the diagnostic process. Please read the posting guidelines and rules! Everyone is welcome to contribute, and this is a safe space.
QUESTIONS ARE LIMITED TO 200 WORDS
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Please read this before posting as it may answer some of your questions:
If you use the search bar at the top of Reddit and make sure it’s set to r/lupus, it will search just the subreddit for your keywords. That way you can get the full breadth of questions and answers.
ENA Panel - Extractable Nuclear Antigen panel, usually automatically done if ANA comes back positive
anti-dsDNA - anti-Double Strand DNA is sometimes automatically tested for, but may need to be ordered separately. This test, when highly positive (2-3 times max cut off at least) is almost exclusively seen in SLE. However, only about 30% of SLE patients have this antibody. It's great if it's there to confirm diagnosis, it does not rule out diagnosis if it is absent.
anti-Sm - Anti-Smith. Typically included in the ENA panel. This is another antibody, that when highly positive, almost always means SLE, but only about 25% of SLE patients have this antibody.
RNP - Anti-Ribonucleoprotein. Typically included in the ENA panel
anti-chromatin - Anti-chromatin is a relative newcomer in diagnostic testing for SLE and probably will NOT be ordered automatically. Its exact utility in diagnosis is still being determined.
Apl panel - Antiphospholipid Antibody Panel, which consists of 3 tests:
LA - lupus anticoagulant
aCL - anti-cardiolipin antibodies
Anti-β2GP - anti-beta 2-glycoprotien antibodies
C3 - Compliment C3
C4 - Compliment C4
CH50 - Compliments, Total. These are part of the compliment system, which is a tertiary part of the immune system.
General blood tests
CBC - Complete Blood Count, some abnormalities in WBC, RBC and PLT counts can be significant.
CMP - Comprehensive Metabolic Panel. Generally looking for kidney dysfunction (GFR, BUN/CR).
ESR - Erythrocyte Sedimentation Rate, this is a nonspecific inflammation marker.
Also, if you suspect you have a rash, getting a biopsy of it done at a dermatologist’s office can be helpful as the pathologist can identify histological evidence of lupus.
Diagnostic Criteria
Diagnostic Process
Lupus Diagnostic Criteria on r/lupuswiki (ACR 2019 criteria)
The rheumatologist/PCP will take a detailed history. I highly recommend writing down as many of your symptoms as possible, especially focusing on the symptoms you have that are in the American College of Rheumatology diagnostic criteria for lupus - see link above.
Write down how long they’ve been going on, anything that makes them better or worse, and how much they impact your life. Do they prevent you from dressing yourself, eating/cooking, bathing yourself, doing hobbies, meeting your obligations?
Anti-dsDNA is more indicative of disease activity and can be elevated prior to and during a flare. Symptoms can also come and go, and over time you may develop additional symptoms. If you scroll through the last week of posts or so, there are a few posts that will have pretty detailed answers to your questions from multiple community members so you can get a better sense of just how full on fickle lupus can be.
Here are some good posts, one is othe
r people experiences in general, the others are rashes (warning: some are particularly severe):
Use ChatGPT to summarize your question if you don't know what to leave out
Question guidance
Don't ask us if you should see a doctor. Go see a doctor.
Don't ask us if you have lupus, if it sounds like you have lupus, if it looks like you have lupus, if it might be lupus, if it could be lupus, or if we think you have lupus. Don't ask us if you should be tested for lupus.
Don't tell us your entire medical history and say, "Thoughts?"
Don't ask us about seronegative lupus. Everyone thinks they have it.
Don't give us a long, exhaustive, detailed breakdown of your medical history. Particularly childhood illnesses.
Don't paste a list of 27 symptoms
Don't ask us to interpret labs.
Don't ask us to identify your rash. See a dermatologist.
Hey, so I was just diagnosed with lupus 2 weeks ago. The rheumatologist said I'm a "textbook case of lupus" and then told me to read up on it on the arthritis foundation website because I wouldn't remember a thing he said because all I would be thinking was "OMG, I have lupus, I'm going to die" which I hadn't been before he said that.
He started me on HCQ and I'm on Diclofenac for inflammation. My PCP commented that I'm on a really low dose of HCQ, so maybe that's why I don't feel any different? I bruise so easily, I look like a battered wife from the hips down.
I'm not sure what I'm asking for, for info and links, and advice, I guess. I'm overwhelmed. In one way, I'm really glad to finally have a diagnosis after 20+ years of this. At the same time, I have no idea where to go from here?
This is how I imagine my lupus (when it’s under control. flare-up lupus is a whole ass anime villain lol). I like how it turned out and thought to share it with yall :)
i can’t help but have this bittersweet feeling towards my life and what it’s brought me. i’ve been diagnosed with lupus nephritis for about a year now and on top of that i also have anxiety and mild depression m. recently i’ve been having a lot of stomach issues and convinced that i have ibs as well. on top of that, my bf of a year and a half cheated on me after everything we have had together. he also reassured me and made me feel comforted and now he’s no longer in my life. thankfully i have a loving best friend and the mercy,grace and love of Jesus, but how can i not be a little deteriorated after all of this. I love who i am and i want to keep striving to be the best version which is why im still hopeful for my future, but i still can’t help but feel a sense of weight on me that nothing is ever going to be how i hope. just wanted to come and vent. any advice or encouragement would be lovely and appreciated. thank you for kind listening ears 😊
I was diagnosed in March after struggling with symptoms for about 8 years. I was previously diagnosed with fibromyalgia and chronic fatigue syndrome, and also chronic migraines.
I was put in HCQ and azathioprine and it has been wonderful for most of my symptoms. It’s also been helpful for my migraines and stomach issues as well. But the one thing that has not stopped is the fatigue. I feel like most days I am just defeated bc I am so tired.
I also want to say that I am a PhD student in my last year so I have been stressed about my dissertation and applying for jobs and potentially moving, and I’ve been feeling better so I’ve been trying to work out and that sometimes causes flare ups for me.
Idk I just feel defeated right now and I am not sure what to do or feel. It’s been so hard talking about this with ppl that don’t have lupus bc they just don’t understand and I am tired of the “just be positive trope” because I am positive… but I’m just tired.
I have had this sore in my nose for at least 2 weeks now. I used my ear camera to get a picture, so the black that you see on the right is the tip of the ear scoop. Does this warrant a visit to my rheumatologist? ENT?
I’ve been on Sotyktu for over a month for cutaneous lupus. My skin is horrible! It’s gotten so much worse. Dr said to give it a chance. Now I have an upper respiratory thing which I understand is also a side effect. Anyone else in Sotyktu that can give any hope? TIA
Been treated for class 5 lupus in the kidneys I was on cellcept but switched to tacrolimus due to copping to many side effects and a 60mg steroid taper.
Next week I'll be down to maintenance dose of 7.5mg of prednisone, but I've had persistent pressure and puffiness around and behind the eyes every day its giving me constant fatigue and lethargic feeling! Anyone here who's had similar problem can give some insight on how long this lasts??
I've been to an optomistrist i am having a steroid reaction, but within acceptable limits...
I am allergic to the binder or something in Hydroxychloroquine. I take Plaquenil for SLE, brand name only as result.
I have been buying from an online Canadian pharmacy because insurance does not cover brand name Plaquenil and it is very expensive in the United States.
In the last month, the Canadian online pharmacy told me that it is not shipping to the United States because of tariffs and scarcity of supply.
My rheumatologist suggested either chloroquine or that I travel to Canada to purchase a 90- day supply of brand name Plaquenil.
Has anyone had this experience recently, and do you have a better solution? Traveling to Canada every three months seems like a lot and
very expensive.
These common side effects of chloroquine are daunting and I am already a chronic migraine sufferer, so anything to add to my headache burden is not acceptable. I’m worried about the gastrointestinal side effects as well as damage to the eyes, just to name a few. I have had no side effects on Plaquenil for 10 years.
Does anyone get pain after walking a lot
i went to a amusement park today and i walked the whole time we were there for like three hours and left
i was fine until nighttime hit and they feel like achy and like the growing pain you used to get when you were younger
this is why when i go to amusement parks/ walking long distances i take a wheelchair but couldn’t this time and i felt confident into walking, i knew id be in pain but sometimes its worth it.
Just wanted to share a bit of good news since this sub seems to be mainly sad stuff. I came back from my appointment today and this was one of the few appointments where my doctor actually listened to me and understood my concerns. Going into this appointment i was worried id have to start titrating upwards on Myfortic as im on 700mg daily. I didnt want to because i was scared it would upset my GI issues again like MMF did and to my surprise she said i didnt need it anyway! Because everything looks good! Im down to 5mg of pred and staying that way until i reach my 1 year anniversary of my diagnosis in March and then we are looking at potentially weaning off provided i dont flare!
She even referred me to a lupus specific counsellor and gave me advice on what to tell occupational health regarding work as i also work in healthcare.
This appointment literally made my day today! I got a celebratory matcha before heading into work. Dont get me wrong i still have my pain and nausea moments on a day to day basis but after months of dealing with a whole heap of crap following my diagnosis this was a pleasant surprise. Dont lose hope! Good stuff can happen to us!
I was originally dx w/SLE, then I was told it was "no autoimmune", then I had positive APS antibodies, was redx w/SLE, then was upheld as SLE, moved to a different state, and now I'm being told it's no longer SLE, but "might be progressing to SLE" so IDK what even anymore. I have major imposter syndrome and I feel literally crazy. I was dx now w/UCTD and SLE is removed, so I'm just.... I'm super at a loss and confused, and I know this is a silly thing, but, I'm just upset.
Dr did raise my Hydroxychloeroquine from 200mg to 400mg, he was confused why I haven't had my dose raised. I said I have no idea.
My experiences w/rheumatologists have been infuriating at worst. I literally had a rheumatologist who dx me w/this say before entering the room, I literally heard him say, "Great, let's get this over with".
Dr's don't want to deal w/me becuase I have autism and ask questions. Even this dr was upset I asked so many questions. But I wouldn't have questions if people just explained things to me in the first place. I'm just venting, I'm upset and frustrated, I feel like I don't belong here anymore.
I've been on methotrexate and now am on plaq. Not seeing much of a difference. My RA sees me every 6 weeks right now still (I feel spoiled by this) and decided if by October we're still not seeing anything we'll talk biologics. He's not concerned about insurance since my bloodwork is lupus, my clinical signs is lupus and I've tried the things insurance wants you to try first.
Today I had a really weird episode that I can only describe as stroke-like. The right side of my face got slightly droopy and weird. My eye swelled a little. Tightness in my chest, agitation, confusion. It turned to pain behind my eye, difficulty putting thoughts together, a headache. I went to the ER and after all the tests was told my lupus had basically mimicked stroke like symptoms.
Obviously, taking that neat news to my RA appt Friday but my questions are for those of you on biologics. What are you on? How long? Infusions? Injections? Is it working? Are you happy? What else are you on alongside it?
Hi lupus fam. 38 y/o female here. I recently had a BAD flare in July (Florida), and I’m trying to figure out everything that was a possible trigger. Two definite triggers were: heat exposure and sunlight / uv (general sunlight plus nail polish uv light exposure). I also believe that the red light therapy bed as well as topical estrogen cream may have also been triggers. I stopped red light therapy. However, I’m split on whether to try estrogen cream again, as I’d only been on it for 2 months (twice a week) before the flare, and it worked SO well (dryness relief) UNTIL the flare. Has anyone notificed worsening OR on the opposite spectrum, had relief from flares with topical estrogen cream?
Just a PSA, although your mileage may vary.
I was prescribed Cymbalta for my depression, as my doc figured it would help with that, and lupus related pain. When I went to pick it up, the pharmacist just noted an interaction with that and my tramadol, and said don’t mix. Cool. So been taking Cymbalta, having lots of pain, so using Tylenol in place of tramadol. After a week I noticed I was feeling off… confused, irrationally agitated, flushed, clammy, with sweaty palms, and my body feeling like it was zapped into a spasm.
Mentioned all this during therapy and we decided it was best to call poison control and just check in. We both learned that Cymbalta and Plaquenil have a very moderate interaction, bordering on severe, as Plaquenil makes Cymbalta stay in your system longer than it’s intended to. Poison control said to head to the ED because it sounded like I was experiencing serotonin syndrome.
ED confirmed, so I spent the night getting it flushed out with benzodiazepines and rest, and finally feeling normal. So big PSA friends, those two meds do NOT mix!
Edit 1: to my last sentence: those two meds may not mix well, but again your mileage may vary
Edit 2: I was also taking zofran daily bc Cymbalta was making me super nauseous, was advised that also may have been a contributing factor to the serotonin build up
Hi everyone!
I just found out I’m pregnant and I’m currently on Plaquenil. I’m a bit nervous about continuing the drug during my first trimester (200 mg). My lupus is pretty mild thankfully.
If you took Plaquenil during the first trimester, can you please share your experiences? Is your baby okay?
I haven’t had my first appointment yet to speak to a doctor about this, but I wanted to hear from someone who went through this. Thank you!
It’s 10:30 and I’ve cried twice already because I feel like no one understands or cares about what I struggle to deal with I feel alone with an ounce of hope left for today .
Hi everyone! I'm fairly new diagnosed with Discoid Lupus. Still undergoing testing but all my levels are high and they are still evaluating for SLE. I started HCQ in August and the nausea and vomiting are killing me. I throw up almost every day or every other day. I've talked to my PCP, who gave me zofran which helps but feels like a bandaid on a broken leg
I know it takes 3-6 months for improvement but are there any tips y'all have to make things better in the meantime? I've been trying to work on my diet but I can't barely keep anything down. I'll have soup or something plain feel well take meds, works for two-three days, try to eat normally then vomiting starts all over.
My rheum said with my levels methotrexate is only my option if I can't handle the HCQ. I'd really like to avoid that (no offense to those that methotrexate works for)
Thanks for any help. Sorry if the formatting is bad using the app.
Edit: also dual diagnosed with sjogren's if that helps with advice
My husband and I are trying to conceive and I've been on Saphnelo for 3 years and feeling amazing. My rheumatologist and OBGYN said I could stay on Saphnelo, and I want to - but I would LOVE to hear from women that stayed on Saphnelo throughout their pregnancy. Give me the good, the bad and the ugly.
I am a 31 year old female that just got diagnosed with lupus in June with possible overlap of MCTD. Since starting imuran I have gotten sick for the first time and let me tell you is this brutal. I thought it was a simple cold but has since turned to pneumonia and it's been over a week and still feel terrible. Any advice on how to handle getting sick in the future or any ways of feeling better faster? Should I have gone to the doctor right at the start of the cold? I definitely underestimated how much immunosuppressants can effect even a simple cold
Guys I am now going through it. My invisible illness became very visible. I have to use a walker can't talk right. Spasticity issues with my arms and back. I look like I am having seizures in public. It's horrible. It just started Thursday. Pain level 5000000000. Entire spinal cord feels like someone has a torch on it. Rheum saw me today and witnessed it all since Thursday I went to the er cuz I was completely unable to walk and painlevel was worse than when I had my kids or the kidney stones I've passed.
Rhemutologist saw me today and witnessed it all in real time. Everything including the pain level. My BP was crazy high.
He said its neurological because my lupus markers are good from treatment with the hydroxychloroquin and methotrexate. I was stable for 5 years.
He's referring me to neurology but meanwhile I don't have a diagnosis other than one er dr suggested ruling out autoimmune radiculopathy.
I am having pain in my left eye when it moves sometimes and some facial spasming and numbness.
Anyway I look odd I sound odd and people want to know what's wrong with me in public.
I had to take an Uber today to my appointment because the pain and spasticity was so bad. I ordered the uber assist and she was nice but she was kinda probing me for what was wrong with me and then of course its the "did you try herbal tea?" Ya know the usual suggestions. My boss suggested I touch grass.
How do you deal with nosey people?
Sorry I ended up in italics cuz its hard to type and Idk how to turn it off.
