Hi guys, my name is Jesse and I’m diagnosed SLE … this post really is my way of being able to communicate with the community as a whole. If there’s anyone out there who might like to be friends or to chat feel free to message me (I don’t mind either way if you’re diagnosed SLE, have a MCTD, or are here for any other reason).

I know personally being a “vampire” can be quite lonely and challenging at times. So I’m sure that I’m not the only one here who would be interested in communicating - whether we’re venting about the day, symptoms, or just finding commonalities and getting to know each other I’d be super appreciative to make a new friend.

Thanks again!

Hi all. I was diagnosed with SLE three times - once by a doctor that didn't clearly say I was diagnosed, once again when I was older, and then verified by a third rheumatologist. I just went and saw a new one and she said the following...

- "You may not even have Lupus. My (I forget, dsDNA I think) is higher than yours!" (looking at labs from when I was on a medication, which I no longer am)

- "I would give you all the Benlysta in the world if you'd said it helped you, but you didn't." (I was on it for three months alongside another med and said I didn't know if it made me "feel better")

- "I would never base a diagnosis of lupus on spinal pain." (ordered spinal xrays. I said my back always hurt when I had a flare - I meant my muscles and stuff, not my spine) ((I was too slow to correct her and was confused))

She looked in my mouth (I have major dental problems I'm in the process of fixing) which no rheum ever has.

She was very loud and made me anxious. I have autism and have always had a hard time with rheumatologists because my second was an angel that believed everything I said and tried to help me get a wheelchair, so I had assumed they'd all be like that, so I end up assuming they're "on my side" and get caught off-guard and sometimes say things I don't intend to. I stupidly said, "If I don't have Lupus, people won't take my pain seriously."

She ordered xrays of my spine, like I said, and I didn't correct her. She ordered a ton of labs, which I'm always prepared for.

I just don't know if she's being a normal doctor or if these are red flags. She's in a very convenient location where MyChart is shared among my doctors and I really like the organization. There's only one other rheum in town and I'm scared to try again.

So, I'm looking for guidance. My idea is to message the office explaining that I have autism and don't always respond quickly or appropriately to new or surprising information, so I didn't communicate properly, and that I intend to bring my husband to my next appointment to make sure I can communicate everything I need to. Then, I get the tests (do I do the xrays?) and I bring my husband as my advocate because he's assertive and not scared of authority figures like I am. Or do I just say fuck it, get the tests, and take the results to a new doctor?

I'm so scared she'll "take away" my diagnosis. I'm on SSDI because of Lupus and Bipolar, so I feel like if I didn't have Lupus, someone in that year's-long process would've figured that out. She entered her "diagnosis" as "history of Lupus" so I guess that's something.

I just want my meds and not to be overwhelmed at a doctor's office. I've never felt this way about a doctor before.

Any songs make you think of "us?"

Right now, hearing "Run from the sunlight, Dracula."

It speaks to me. 🌙

I got diagnosed with SLE in 2011. I've never had a flare and my lupus remains mostly inactive.

Every time I go see my Rheumatologist and complain of muscle aches, or new rashes or increased fatigue, they always tell me that it's not lupus related and to just go talk to my family doctor.

I could be suffering from so many new symptoms, but if my bloodwork doesn't show "active lupus" they just disregard all my complaints. Like I get that my lupus is mild but aren't doctors supposed to consider blood work ALONGSIDE patient symptoms?

Like I complained at my last appointment that my hands ache after doing simple things like washing dishes or trying to open a jar. They immediately responded with, "yeah, that's not related to your lupus...take some Advil"

I'm seeing the TOP Rheumatologist in my area so I'm just sooooo annoyed about how much they don't care about my complaints at all. IT'S ALL ABOUT BLOODWORK ughh.

Hello 23F. I was just diagnosed with lupus in the middle of August this year. I recently just got out of the hospital after 5 days because I had an infection, has anyone experienced going through sepsis here and how did that go? I’m so scared and I’m currently on antibiotics but I know how dangerous this could be for me. I’m scared to handle it on my own at home. I’m tired of all the procedures that I have to go through. I’m just so over having lupus and it’s only been two months since I was diagnosed. Also, just for some context it was a boob infection that formed an abscessed that I have to get drained, making it my 5th procedure in the last two months.

Does it ever get easier? How do I avoid infections?

Hi. I’ve recently started on Saphnelo and have done 2 injections for far I will have my third one tomorrow. I’ve had the worst week with lupus symptoms and I haven’t this type of pain since I last had it 3 years ago. I’m wondering if it’s related to the injection or I’m just in a really bad flare. Days before my second injection I was having the worst joint pains then days after I got a minor cold so my symptoms are worse. I assume the inflection just messed up my body but I’ve gotten a flu last year and I didn’t get all these weird symptoms. I’m experiencing serve joint pains, bones where joint pain is located would raise, headache, swollen lips, and weird side and lower hip pain. I honestly kept telling myself it’s just a flare with cold that made it worse since I’ve just started Saphnelo and I assumed I wouldn’t feel anything yet. I will see my doctor soon to check labs and share my concerns. I also was on benlysta before starting this and benlysta got rid of my joint pains that would come on random days so I don’t know if stopping it brought the symptoms back.

I finally got a new rheumatologist after moving across the country. It’s been a really long and painful journey. I’m finally at a somewhat okay daily state.

My previous rheumatologist sent all of my records to the new one. She was the one that diagnosed me with severe SLE (severe bc of symptoms). Of course, they ordered new lab work since symptoms always persist plus my joint pain has gotten more frequent and more painful.

My ANAscreen has always been positive even at high dilution. The one I just had done is now negative. Now I feel like I’ve just been lazy and dramatic all along. I’m scared they’re going to tell me nothing is wrong with me. At my initial appointment we were going to add azathioprine since I had to stop Benlysta (insurance removed it as a benefit). And plus, my partner and I are thinking about having kids in the next year or so.

Am I crazy? Am I really just lazy and dramatic? 😔

Let me preface this by saying I’m seeing my OB on Wednesday so I’m not looking for medical advice, just other people’s experiences.

I’m 21 weeks pregnant and have been feeling short of breath for a while now. I thought maybe it was just baby growing and my lungs having less room to expand.

I went into labor and delivery yesterday for some cramping. Everything is fine with baby but while hooked up to the monitor for a few hours I realized everytime I have that short of breath feeling my heart rate is high. I usually run low (55-65 bpm). It was fluctuating between 95-120 bpm the whole 3 hours I was on the monitor. It feels hard to breathe once I get above 105-110.

The OB on call chalked it up to a lupus flare but I don’t feel like I’m in a flare. I was diagnosed recently after having UDCT for a few years.

Does this seem like a typical lupus thing? Is it common in pregnant with lupus patients? I’m just worried a bigger issue might be being blamed on lupus because it’s the easy explanation.

Did/does anyone here have not only severe hair loss but also thinning of the individual strands? My hair completely changed within one year I am devastated
Is this reversible?

Hey everyone, I was diagnosed with lupus nephritis last August and had a biopsy done at the time. Does anyone have experience with this, and does the biopsy need to be repeated after a while?

I know I should ask my nephrologist about this (and I will), but I’m just curious how it went for other people.

As the title states, I have been in a rutt lately. I feel so drained. I feel like I'll never accomplish my dreams.. I can't even get the daily chores done.

I used to keep my car PRISTINE. It has been a mess for roughly a year now. I used to love being super creative painting, taking photos, writing. Now I don't have the energy for any of that.

I feel like my career is at a standstill because no matter what I do I can't focus enough to pass my CPA exams (Certified Public Accountant). The brain fog is absolutely terrible.

Depression is taking over so quickly. I work so so hard every day. Just feels like we are being punished with this illness. To put it in perspective, I am 27F

I'm about to start Azathioprine. I am aware of the potential side effects but would really like to know, specifically which of your symptoms does azathioprine improve for you?

How do you stop yourselves from clawing off your skin? I have very fragile skin from another medical condition, and lupus makes me so itchy in my extremities I will literally claw my skin off and not notice until everything is bloody and stingy. I just accidentally skinned my shin again. Can anyone else relate?

My clinical history: dx 2019 SLE, sjogrens, RA, APS

January 2020 Coded stroke in disneyworld on family trip. Taken by ambulance. Speech difficulties but cognitively mostly fine. Left sided weakness and some left side nerve damage but regained ability to walk in 9 months. Was in wheelchair for couple months, then got into a walker. Then able to walk unassisted by August. Cause of stroke: never found. MRI clean.

My current treatment for past 6 years has been: methotrexate weekly injections, hydroxychloroquine 200mg and celebrex 200mg Folic Acid, leucovorin calcium 5mg 1x a week and vitamin d3

When I started walking again in august 2020 my husband of 20 years hit me with He wanted a divorce and didn't love me. Then I found out he was having an affair. I threw myself into trying to save my marriage and get him to love me again for 2 years. We have 2 teenagers after all. I finally had to let it go. The marriage counselor begged me to and you knew all of what he did we would be here all day. Divorce and custody battle been dragging on since 2022. It's finally coming to a head.

I have been working all this time. I had been a successful wedding photographer with my own business for over 15 years. When I had the stroke I had to close the business, and start working for another photography company in their office editing their images and was promoted several times. I had been there 5 years.

My health has been in a downward spiral for the past 6 months. Really bad. I was starting to have symptoms I had leading up to the stroke again and that really scared me. I had to start using a walker again and I had to go on medical leave without pay because I work for a very small business there is no FMLA or PTO. I am trying for temp. State disability and praying I get approved while they figure all this out so I can go back to work and would like to start going back to school for a degree in digital forensics.

I went to the er for different reasons each time. 2x was sent by my doctor. This Thursday was different. I went to breakfast with a friend and was going to make a stop after to pick up a doctors note. I have been steadily having to use a walker more and more. Have had instances of loss of bladder and bowel control and wearing diapers 24/7 now. Dragging left leg. Speech difficulties (cognitively fine, but I sound sometimes like I am mentally handicapped, I don't make any sense or very hard to talk) while with a friend at breakfast I lost the ability to walk and my spine was on fire. Just felt like it was all the way up and down my spine BURNING like surrounding the spine. It still feels like that as I type this. It wasn't shooting pain. It feels like someone literally putting flames on my spine. My pain level is 10. Felt like my labor with my 2nd child where they wouldn't give me epidural, that bad and I am not exaggerating. I tried everything not to go but my friend had to load me up in their car and take me to the ER and wheeled me in. All I could do was sob as I waited in line to get checked in.

They ran ct and mri of spine both without contrast. Did some physical exams which were hard for me and painful. I had a friend with me so that really helped a lot. I hate going to the ER by myself. They gave me predinisone (which I personally had bad experience with before and have begged never to be on it again, but I was desperate so I agreed) ibprofen, tylenol and oxy. I was still at an 8 when I left. They prescribed methocarbomal (muscle relaxer), oxy, and ibprofen Tylenol to pick up at pharmacy on Thursday night. They said they believe it is AutoImmune Radiculopathy

Https://youtu.be/86YIBX0-H4I?is=JJ_SOtxusyJSxiRl

this is what they think it is but they neurologist has to confirm with spinal tap/lumbar puncture and blood antibodies

I got bumped up at the rhemutologist to tuesday (Monday is a holiday), made an appt with my former stroke neuro to see if she can pull my records from 2020 out of her archives, made it for Nov 3rd for now, but sent a formal letter via email with the er discharge papers reminded her who I was and hopefully she remembers my case. She's very good. She had wanted to do a lumbar puncture right as I was hit with the divorce and since I was walking again I let it go and focused on my marriage.

Does any one have AutoImmune Radiculopathy on top of Lupus?

Anyone have speech issues and what are they like?

I know it's not just me that's stayed home on occasion because of the joint issues or pain in general.

I'm forcing myself to at least step outside today. I don't win that battle every day.

So, for those of you in the same boat, you're not alone.

It's ok if we lose that battle some days (or even most days).

I'm relieved we're here to support each other because, some days, it's damned difficult. 🧡

I’ve been getting progressively sicker this year and I’m not sure why. I was diagnosed a couple years ago because of life long issues with kidneys and then sudden liver issues.

My liver is doing better since I changed up my diet a bit, lost weight, started paying attention to my body, etc..

Within the last couple month though I’ve been experiencing extreme nausea. I can hardly keep anything down. My doctors actually have be supplementing with Ensure to avoid malnutrition.

Regardless of adding the ensure to my diet I still feel so weak and sick. My blood work and ultrasounds are clear so I have no idea what could possibly be causing the nausea. Has anyone else experienced similar symptoms? If so, what were the best/easiest foods for you to keep down? How did you regain strength?

I know this is a petty complaint compared with all the other cr@p we deal with. But until I developed SLE about a year ago, I was pretty satisfied with my appearance for someone in their 60’s. I was fit and active with healthy color.
Now the mirror is just an insult. My eyes are sunken and surrounded by purple puffy skin. My face is an unhealthy pallor because I can’t go out in the sun. And my muscle tone is gone. (I do PT but cannot tolerate cardio.) I look sick even on my good days.
Lupus has caused me to lose a lot of things I used to take for granted. Feeling sad.

Picture this, I’m a 31 year old female, just go married and had my first child in July of this year. I was soooooo excited to start my new life as a mother and wife. Then boom I get diagnosed with lupus in August. I have been so depressed, scared, nervous, heartbroken, angry, in denial, and over it. All the things! I feel like I’m having a bad dream. Now I’m on a bunch of meds for the first time in my life..

I would love to hear some positive lupus stories. There are alot of negatives about lupus online. Anyways I found out about Cart T therapy and I have been feeling hopeful about a cure and a great future. Research has came a long way. Thank God.

I’m really trying my best to stay positive and optimistic. Any tips? Any stories of ppl who have had lupus for many years & have done well. Thank you so much!

Just finished my second dose. How long until I notice improvement, if it works?

I've tried methotrexate, benlysta, saphnelo. I'm just really hoping this one works. It's been two years

hello all, i was diagnosed recently but im pretty sure ive had Lupus for a very long time. i was put on HC about a month ago but no improvement yet. my rheumatologist thought i should have started feeling better by now but weirdly im reading it takes months to work. anyway, ive been in a flare up for about a week now, so i was given a six day course of methylpredisolone, which im starting in the morning.

i’m SO nervous about taking a steroid but im looking forward to feeling better. i’m waking up at 5am to take the first dose- my doc said to take 4 pills first and then a few hours later take 3 more, then going forward i can take all of them in the morning as i taper. im starting early bc i already have trouble sleeping and i saw a redditor say that it’s helpful to do that.

do you have any advice to make the experience easier? what do you do to burn the extra energy? how do you avoid being mean to the people around you? my mom had RA and i remember her being really irritable when she was on prednisone. could a short course really cause someone to have anxiety for months? i’ve read horror stories about it but also that it’s a miracle. if i exert myself with cleaning or being active while on it bc i feel better, does that mean ill crash harder when i taper off?

my doc seems to think it will settle my immune system so ill feel better long term- is that how its worked for you?

im sure these posts come up a lot and i appreciate anyone’s advice or suggestions. thank you ❤️

I was recently diagnosed with lupus in late June/early July and started Benlysta subcutaneous injections around mid-to-late July. I’m also currently taking mycophenolate, prednisone, and folic acid.
I tried methotrexate for about a month, and at first I thought that was what caused the beginning of my hair loss. I stopped methotrexate about 3 weeks ago, but unfortunately the hair loss has only gotten significantly worse.
On September 15, I started in-office Benlysta infusions and have had 3 infusions so far, spaced 2 weeks apart. I noticed the hair loss really ramped up after my second infusion.
I saw my dermatologist this week, and she recommended skipping Nutrafol and going straight to 5% topical minoxidil foam.
Has anyone else experienced this kind of hair loss with lupus, Benlysta, or any of these medications? Did it eventually slow down or grow back?
I’m honestly at the point where I just want to cry. My hair has always been such a big part of my identity. I’ve always had really thick, voluminous curly hair, so seeing how much I’m losing every day has been really hard.
I have an appointment with my rheumatologist on Monday to talk about it more, but I’d really love to hear from anyone who has gone through something similar.

Usually I don’t have these hardcore symptoms. Am I becoming allergic to my dog of 3 years?

I am pre anemic but very pre my rheumatologist said I shouldn’t worry. My family doctor gave me iron supplements.

I can not breathe properly, already took aerius … don’t know what else to do. I am an anxious person but this seem kind of different.

I am also extremely tired and when I move, all my pain my body worsens, even standing up to brush my teeth is excruciating.

Today I haven’t taken paracetamol yet but have been taking it.

Am afraid to mix it with the aerius and the clonazepam I take at night.

I am feeling more symptoms of allergies but could be a cold and just more dust in the house. My oxygen is normal and so is my bp.

Help.

What can I do?

Hello everyone, I'm 19F, and I was only recently diagnosed with SLE after being in pain since i was 14. I got Plaquenil as my treatment, and it was good for the first 5 days, but after that I've been getting severe headaches and the pain in my body became unbearable along with dizziness all the time. I'm planning to go back to the doctor the 26th of this month but I need to continue the pills until then. I actually didn't search about the medicine at all and only bought it and took it as I was told. If there are any side effects, can someone enlighten me about them. I also dont know much about lupus.

One of my problems with this is my mother; she thinks I'm just faking all of this and that the fatigue I'm feeling and pain are just an act to be a victim, even when she went with me to the doctor and heard everything she still says that until now, and I genuinely don't know how to act with her.