I get a high heart rate after just a few minutes of activity and my normal heart rate is usually between 87 and 95. Anyone also struggle with this?

Has anyone used tallow based products for their skin issues. I had a biopsy done that was inconclusive, popped positive for both eczema and psoriasis. So far I have tried just about everything OTC, with only prescribed steroid topical really making any difference. Not looking necessarily for a "cure" but rather some relief. Harsh winter is knocking and I'm already cracking. Any success stories with this type of product, any other recommendations?

Hi everyone, would like to ask if anyone had any positive or negative experience getting dental treatments and procedures (specifically getting braces, not invisalign) after getting diagnosed or while on flare or taking medications?

My rheum actually gave clearance for it. However, I'm currently on flare and taking prednisone, HCQs, and Imuran.

I've read that it's painful when it's getting adjusted. I''m worried that the pain or "stress" after getting it and between adjustments can trigger or worsen symptoms.

I haven't really changed anything recently (meds, food, etc) and not going through a significant flare up, but I've been having a lot of trouble waking up in the morning and I'm in bed for around 12 hours. My body usually is up for the day after like 7 hours whether or not I've had enough sleep. Was wondering if this change in sleep was significant or meant anything?

I’ve always considered myself very optimistic, but then again, maybe my lupus is less severe than most.. Additionally maybe, is the fact I’m not on any medication and also whenever I go to the doctor- the elephant in the room is never discussed unless I bring it up first. However, recently I’ve started losing my positive view of things; and my uncertainty of my future is slowly creeping in.. Headaches, insomnia, hair loss, blurry vision, knee pains, and TMI - but a my menstrual cycle has now been ongoing for 3 weeks with only spotting since the first day all the way up until now. I had myocarditis a month and a half ago, and at the start of 2023 I got diagnosed with an inflamed optical nerve (3rd cranial) that dilates only my left pupil and has continued to make my vision worse as time has progressed.. Every shower I have, I lose at least 3 handfuls of hair, and just when I think my skin is getting better- I get 3 new rashes on my body and my face breaks out in the worst cystic acne I’ve ever had in my life.. The sun has become more painful, I’m finding myself gaining more weight even though nothing has changed in my diet.. All the while, whenever I tell somebody how I’m doing; they give me puzzled looks as if I’m lying to them because they don’t see what I so eagerly push myself through everyday. It’s like I’m a truck hurling down the road at 150km/hr into a brick wall of realization. My optimism can’t be expressed when I’m feeling like this anymore, I’m not giving up but my body is refusing my mindset. I’m at the mercy of my own being now, and this is the scariest feeling that I have ever experienced.. I have no say, no matter the outlook. My body is ultimately choosing for me now, and I’m the passenger hoping for the best.

My mom has lupus and is on Cellcept, prednisone, hydroxychloroquine, and omeprazole. Over the past couple of months, after being hospitalized for pneumonia, her food sensitivities have become severe. It started with her being unable to tolerate apples, bananas, watermelon, rice, or milk, so she stopped eating these foods. Now, every time she eats anything, she experiences terrible body aches and severe headaches. She has lost a significant amount of weight, dropping from 140 pounds to 115, because she’s afraid to eat due to the intense pain. Her doctors haven’t been able to help because nothing abnormal is showing up in her labs. The allergist says it’s not allergy-related, as her symptoms don’t align with a typical food allergy. We’re really worried she won’t be able to live like this much longer. Her doctors don’t know what else to do. Does anyone have suggestions on what this might be?

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.

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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. This isn’t to say that you can’t ask questions in the general forum.

ANA tests

Positive ANA does not equal lupus!

While more of a rule out screening (negative ANA = very unlikely to have SLE).
Upwards of 15-20% of healthy individuals in the population at large will have a positive ANA. Only about 10-15% of people who have a positive ANA will later be diagnosed with SLE.

Tests used in diagnosing lupus

• 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 Process

Lupus Diagnostic Criteria on r/lupus wiki (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?

ANA varies from person to person and doesn’t necessarily correlate with disease activity.
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 other people experiences in general, the others are rashes (warning: some are particularly severe):

User community diagnosis experiences
This is a malar rash
Photosensitive Lupus Rash
SLE Malar rash

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• 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, or if we think you have lupus.
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My husband and I are thinking about moving to New Mexico and I was wondering if anyone has had any luck on finding a good rheumatologist for Lupus and a hematologist/oncologist there? I am really hoping to find doctors that care about their patients but if they don’t and they provide good health care I don’t mind either. Any advice would be helpful.

am newly diagnosed and have some questions about weird symptoms

I just wonder if it's just me or is it common? If you have tips or tricks let me know..

• I am tired after taking a shower

• I am tired all the time. It's like my body is super tired, but my brain is working

• I have chills, like if I had fever for hours, after I work for a long day

• | have shortness of breath with no clear reason. I am not overweight and I exercise tew times a week. The shortness of breath is not during effort

• I feel dizzy very often, especially when I eat. That's why l've lost 15lb since last year

• my fingers get swollen daily after work and I can barely use my hands く Thank you!

I wanna get my nose pierced at some point, along with my belly button (not yet), and a cover up of scars with tattoos.

Did you react and heal okay to it? For reference, I have lupus SLE and lupus nephritis. I take hydroxychloroquine, mycophenolic acid for lupus. Prednisone for flares, but I’ve been off that for about a month. I know the mycophenolic acid lowers my immune system further, so I’m unsure if my body will heal properly.

Out earrings back in. They were closing up. Well, I shoved em back in and they bled and healed okay so maybe the piercings will be okay at lea st.

Hi all.

I'm the little sister of a 45 year old woman who has lupus. She is on coumadin because she has had problems in the past for blood clots and had heart surgery when she was 18.

With this background, does anyone know of complications or anything helpful to know for her having a hysterectomy surgery?

I'm so scared for her and want to know any and everything to help her reduce risks and heal.

Thank you so much and best wishes.

What sunscreens are you guys using for your face? My skin is sensitive, and acne prone so I’d love to find one that works well for me. TIA!

How do you guys manage your life? I am not able to stay on top of housework alone it’s too much. My friends and family are very busy and I can’t afford to hire help. It’s just starting to be too much to manage dishes, laundry, housecleaning etc my house is starting to get out of control 😔

I just saw a new rheumatologist and it was a really disorienting experience because all of a sudden my presentation is “severe” and why on earth did my last rheumatologist only put me on methotrexate without hydroxychloroquine, we need to get you on new meds asap and like,,

Literally for the last two years I’ve had everything downplayed and my doctor has wanted to keep me on as little medication as possible, we’d been coasting on the general idea that things are good enough and my lupus isn’t really that bad so don’t worry about it :)

And now come to find out that it’s actually bad enough that this dude looks a little panicked I’ve gone this long with so little meds? I feel kind of cheated because apparently I should have gotten a second opinion on this ages ago.

At first it felt like the other doctor took me seriously but I kept getting that “oh well you’re such a complex case we need to be careful,,,” crap that I always get. But since I always get it I kind of assumed that it was the normal response. Apparently once you get to the point where psychosis, neuropathy, dropfoot, and seizures are involved it’s in the very bad category. He wants an MRI because he thinks the inflammation could have caused changes to my brain. And like, yeah I’ve been saying that forever but everyone just glossed over it and acted like it was a totally normal presentation that didn’t need to be addressed.

I’m really glad to be with someone who does want to address it now but I really do feel scammed by neurologists and rheumatologists who have acted like I was fine when apparently I’m absolutely not. I knew I wasn’t, but I still didn’t look for another doctor and now I feel kinda dumb for that.

Anyway, if you’re having serious neurological symptoms and your doctor is saying it’s no biggie apparently that’s actually bullshit and you should see someone else. Also he finally acknowledged that I do in fact have a malar rash which was such a relief but also pissed me off because two different rheumatologists convinced me I don’t actually have one even though I can see it with my own eyes.

I don’t understand how I manage to end up going along with being told to my face I’m fine when I know it’s not true, I can see and physically feel that things aren’t fine, my bloodwork doesn’t imply I’m getting better, and there’s no evidence to the idea that things are better or stable.

It feels like someone is punching me but every time I get up to fight back a random guy tells me I actually didn’t get punched and there is no danger of it happening again. But there’s literally no evidence that the person who has hit me several times is planning on hitting me, I can see and feel the proof that I’ve been repeatedly hit, and then I just stand there and nod along like oh that makes sense, I must have imagined it ☺️ I don’t get why one doctor can be like eh good enough and the other person is immediately like ?!????!?? What makes them want to downplay and deny things are actual issues when we can both see them right in front of us? The rash is the same rash that’s been visible this whole time, why would she tell me it wasn’t there? Why did I believe her?

It just gets so confusing spending so much time being told something isn’t that bad only to have the next person say it’s severe and start adding meds immediately. I don’t know if I’ll ever be able to trust anyone who tells me things are fine because I’ve been tricked into believing that so many different times.

Has anyone here heard of vitiman infusions for lupus? I got this recommended to me right after my diagnosis (I got diagnosed with lupus, Sjorens, and overlapping connective tissue disease on Thursday) but it scares me a lot. I used to get saline infusions 3 times a week for POTS but research shows it increases the risk for heart disease and other complications so I stopped doing those. (Even though they helped me so much!) I don't wanna start this if it's gonna damage my body or liver (I already have a fatty liver somehow)

This is secondary to the medication they're giving me. They're starting me on an immunosuppressant aswell and LDN She said it seems to help patient with fatigue, she wants me to come in weekly for them

Here's the cocktail my dr reccomended: Option 1: Vitamin C- 1000mg Magnesium Chloride - 200mg Zinc 10mg B12- 1000mcg Bcomplex 1ml Glutathione 600mg Option 2: Vitamin C - 4000mg Magnesium Chloride - 1600mg Zinc - 10mg B12- 2000mcg Bcomplex 2ml Glutathione 600mg Calcium chloride 700mg Potassium chloride 200 mEq Sodium Bicarbonate -600 mEq Dexpanthenol 500mg Pyridoxine 200mg

Has anyone else done too much, too many days in a row and then feel so so tired all you can do is sleep until you wake up so hungry that you eat more than you normally would and go back to bed. Then just repeat this the whole day?

I was recently diagnosed and previously did not know that my flares weren't just me being lazy or weak... I always forced myself to just push through it. Now I give myself more grace, but I feel so unproductive and like I'm "wasting my life" on days when I have to be in bed a lot.

I know this is totally a capitalistic mindset and I need to listen to my body, but how do y'all cope with not being able to do anything other than go from couch to bed during a flare:/

I used to be super active and outdoorsy and now a 20 min walk in the park makes me feel like I was hit by a truck. Honestly it's depressing. I feel so blegh sitting in bed scrolling on my phone but it hurts to even get up..

are there any risks to taking a PPI? i got prescribed pantoprazole. i’ve seen mixed things about lupus and ppi’s and about vitamin deficiencies. i have awful gerd that’s flaring right now and it’s rly hurting me.

Has anyone done a study or clinical trial?

Has anyone signed up to be in a research study or clinical trial that’s testing new treatments for lupus?

If so, how can I find one? How do you sign up?

Nothing is working for me and I’m desperate to find a treatment even if it’s experimental.

I’m in USA if that helps.

hi everyone! I (24F) was recently diagnosed with lupus. I have had my nose piercings for quite a while, healing was fine but within the past 6 months i’ve started developing nose ulcers even while taking my medicine. My piercings are making it more difficult for the ulcers to heal but I really don’t want to take them out. I was wondering if any of yall had any experience with bioflex or if you’ve tried any OTC medicines to help heal the ulcers faster. if I can’t figure out a way to heal the ulcers, I may just be forced to take them out entirely:(

I am very new to this group so I apologize if this has been answered, I saw a lot of posts about nose piercings but nothing about this specifically. I hope everyone has a lovely day! 💜🦋

Hi everyone. I’m new here.Just needed to vent a bit. I was diagnosed with SLE in 2004. It’s was a lot. Got to the point that the lupus wasn’t active in my blood work and they weened me off all the prednisone and I thought great! This was around 2018 or so. I recently started working as a middle school teacher with a horrible coteaching situation. My hair is falling out- woke up to bald patches. I can’t sleep. I’m not eating. My joint pain was getting crazy to the point I was limping more often. I go to my rheumatologist and the blood work comes back as the lupus is active again to the point that they wanna put me on prednisone for about 2 weeks. I’m not happy. All over a job?! Oh. And I’m in graduate school too. I cannot deal! I haven’t felt like this in so long, I think I’m in denial. Those early lupus days were intense not just on my body but on my emotions. I can’t handle that shit right now. I’m already feeling depressed and this on top of it? It’s too much. I need to put my health first again but I’m finding it impossible as a new teacher. I absolutely hate it and I’m ready to quit- stress surrounds everything about education right now. And I’m over it. Has anyone been here before? Restarting lupus treatment? Any advice or good vibes are appreciated b/c I’m barely holding on.

Career advice with Lupus

Recently diagnosed, and honestly I’m freaking out.

I’m 20 years old - I have fibromyalgia, POTS, hyper mobile eds and possibly vascular eds. And a few months ago I found out lupus. I just transferred back to on campus school (at a very small college as I can’t walk far) and it has been difficult. Unfortunately my school is being very tough with allowing my accommodations, but what I’m most worried about is how many flares I’ve been having. I’m doing everything right but I’m not sure if im overworking myself or what. The courses I’m taking are straining too and my brain fog is bad. I think my career path in working in medicine in general is not foreseeable.

I really want to be a nurse. Very badly. I was in the hospital a lot this year for a separate issue than above, and I am so eager to help children at bedside. However, today was the second time that I almost had a syncope spell after standing in place for 30 minutes at a club fair, and now my body is totally out of wack. I’m in so much pain and I feel like I won’t be able to peruse healthcare. Even if I go to med school I feel incapable because of my memory issues and although I want to do residency i don’t think my body can handle it. I think I’m going to look into Mayo Clinic for the reasons above to so hopefully that may give clarification to root cause, but I think the amount of stress that I am putting myself in being pre- nursing (and alternatively pre medical) is too much.

Additionally, my school is not accommodating whatsoever and the classes are limited to nights which is when my symptoms tend to get worse and my doctor said I cant take. I had a bad highschool experience and want to transfer elsewhere where I can also get the accommodations (and have friends, I hate the social life here). I feel like I have to pick overworking myself in science courses or going elsewhere to finish out my degree in psych and get my masters in whatever career field after. The campuses of the colleges I want to go to are just too big and I can’t do multiple labs and lectures combined into a semester. My mental health already sucks because i feel so incapable, but I have no friends at this small school and I’ve been home for my freshman year of college bc of other med issues. What do I do?

Are there any healthcare workers here? Or any non corporate jobs? I really despise working in corporate but I feel like it’s my only options because of lupus. I really want diversity in my role but I feel so limited to a desk and chair.

Currently diagnosed w/Lupus & RA. I've tried and failed lots of different drugs & even relocated from a rural area to a city so I could gain access to one of the best clinics in the region. Sadly the doctor was super dismissive and the final straw was him accusing me of MH issues instead of listening to my very real medical issues.

I made the difficult decision to switch doctors, yet again, and it's been one of the best decisions I've ever made! The doctor sat with me for over an hour to get my entire symptom history, what led to diagnosis, all of the treatments I've tried and failed, and my present concerns. He did a thorough assessment and acknowledged issues no one else has ever cared about- specifically that I'm in pain even when my joints aren't inflamed. He cared about my hypermobility and is looking into some additional conditions that could be causing my current issues associated w/ that. He sent me for additional diagnostic blood work, xrays, and PT- after the first visit! I've never had xrays on my knees and I've never been allowed to do PT (diagnosed for 7 years). I'm just shocked at how much time he spent and how he actually didn't dismiss anything I said. I've never had that!

Sharing to say, don't be afraid to switch doctors! I was so worried I'd get someone worse or I'd be perceived as a problem before I got in the door but it's been so much the opposite and so worth it. Y'all, don't lose hope!!

Stupid me has been trying to figure out what's wrong with me.

I've been describing it as "I feel like I feel when I'm sick."

My whole body hurts. My skin hurts. My head feels spacey. My breathing is off. Everything is in slow motion and time is passing weirdly. Pain is super high, energy is super low. Plus, I'm cold all the time.

Someone here gave me a link to an electric hooded throw, and I've been living in it.

"It feels like the flu without the flu." And that's when I finally realized I'm in a flare. The stress from the election has put me in a flare.

With the current political situation, the incoming president has promised to repeal the ACA, and has the numbers to accomplish it. The ACA pre-existing conditions mandate has allowed me to purchase health insurance for my diseases (lupus et al) and i am anticipating this going away., and I would like to hear what you guys did to pay for coverage for your diseases. thank you

I’m one. 7 years in.

I want to hear your experiences, your ups and downs and any advice on your fatigue or time management.

Any management skills that helped you with the lupus aspect, the stress of dealing with other people. Etc. good bad and ugly.

Thank you

what are supplements you take while having lupus?

I got diagnosed 2 months ago...I'm on a ton of medicine like Methotrexate...prednisone and hydroxyquin... but I wanna see if there are supplements that can help as well :3

even other advices would be lovely tyyy

p.s never knew lupus would literally turn my world upside down and... change everything

what a journey to be on...

I don't know if anyone knows how to go about this process. I'm going to be on IV meds and wanted to know if I know a Board Certified Nurse how can I have IV meds done at home. Is that possible?

Looking for a primary care physician in Georgia. I live in the Woodstock area but am OK to travel a bit for a good doctor.

Does anyone have a primary care physician they love, that portrays experience with caring for patients with lupus and works well or closely with your other doctors - especially rheumatologist?

My PCP is not bad, I would just feel better seeing someone who has experience with lupus patients and wants to have a good report with my rheumatologist. Thank you!

Also wondering if anyone knows of a therapist who has experience with working with people with chronic illness? Recently diagnosed with lupus and already have both hashimotos and celiac. Looking to talk through this with a mental health professional.

Thank you so much in advance.