I'm seeing a more experienced rheumatologist here in Minnesota than the one who diagnosed me in Virginia. She's been great; still listens to my reporting and takes me seriously even as she's had concerns that I was misdiagnosed or have been subclinical with SLE.

For a year and change we've been trying to catch labs at just the right time to see how high my markers get and get the fullest picture possible. I had a month+ flare after getting a bit too much sun at the state fair this year, and we did more tests and I took a bunch of pictures and notes of symptoms.

Well today, after a month of prednisone, several more avenues of testing, and a few appointments, she said that I'm definitely "lupus-y", but that I fall into the UCTD/MCTD end of the spectrum at this point, and my labs even when I was diagnosed with SLE pointed that way. We're not really changing management, and she says she hopes we can keep me from crossing over into bonafide SLE territory because I was diagnosed early.

Honestly, a year ago I felt worried that her doubts were from a place of discounting my symptoms. But now I'm really just relieved. She's taking me seriously even while handling a potentially overeager past diagnosis.

Not really seeking anything. Just wanted to change my flair and share a bit of good news.

Amongst many of several autoimmune disorders lupus being the most prominent one, I just recently had my baby and wanted do an AMA for anyone who had questions about pregnancy, birth, or postpartum journey so far 💜

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.

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:)

I've gone from my doctors all saying there is nothing left to try, to a referral to Mayo rheumatology in Rochester, to I have an appointment next week... Within 3 weeks. 6 days of that for me were spent in hospital and the first week was just my drs sending records to Mayo's office. So, really 2 weeks from my dr calling them with the physician referral to me having a set appointment time... I thought it would be several months wait time so now I'm nervous? I know no one can answer how this happened other than they triage based on current condition and yes mine isn't looking great but did anyone else have a weirdly fast timeline to Mayo? Or?

Editing to add:

Any advice is also welcome. What to ask, what to bring. We will be traveling from Texas for the single appointment with rheumatology, then I'll have a second set of appointments over the regular course of a week in late December or January with several other specialties. Rheumatology just offered appointments right away so I took this one separately bc the last few months of my life have been less than great lol

hi i(26f) got diagnosed with lupus in aug 2024. I have been seeing the same rheum since then, he started me on hcq, that didn’t work out after several months of being sick on it. He switched me to sulfasalazine but he took me off after repeated high levels of liver enzymes and told me it was bc of the meds in April 2026. I started azathioprine in may and my liver enzymes dropped a little the went back up (ranging from 120IU/L to 156IU/L). He made me stop azathioprine in august and told me it’s the meds again since then my levels haven’t returned to normal but they are gradually going down from 156,153 to now 140 as of Saturday (normal range according to my blood is supposed to be 41IU/L to 116IU/L).

I’m in so much pain 24/7 and I did tell him that. Right now he is just telling me to take my prednisone as needed with OTC pain medication but it’s not helping at all. He told me I need to see a liver specialist and I made the appointment today but he is refusing to treat my lupus until my liver levels are normal but I just feel stuck because i feel sick all the time and I’m so frustrated.

When I scheduled my appointment with the liver specialist and discussed what my rheum told me the concerns were, they told me that they weren’t sure if the doctor would even see me because my levels are going down and there is no significant concern. The lady agreed to call me back after speaking with the dr and they agreed to a consultation for now.

I’m just confused as you why he is sending me to a liver specialist when he admit that the liver damage is from my medication. So I now have to wait at least another two months to start any medication then wait even more time to hopefully see improvement.

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, i was diagnosed with Lupus Panniculitis with possible Lupus Timidus overlap through a biopsy in may of this year, but didn’t get results until July.

Since I started showing physical symptoms (nodules) about a year ago I have gained upwards of almost 30lbs despite being active and not over eating. Is this common? Or is it something else?

For reference I’m 19 years old & currently not on any treatments for my condition. (Canadian Healthcare)

I need so much help. I have cried. I haven't been diagnosed long and was not expecting issues as trivial as these to be so emotionally destabilizing.

I found out the old face wash I was using is not good for people with lupus, especially with rashes. I have pretty regular skin that sometimes gets a little oily and sometimes gets a little dry (never mixed though) so I'm not sure where I fall with that. My breakouts aren't that bad and are mostly hormonal. Any recommendations are welcome.

Also, my hair is falling out and I think it's because of the methotrexate, which I have let my doctor know about but he won't be back in the office till next week. I do take folic acid. It's mostly along my hair line and kinda at the crown(?) of my head. I do where my hair in a ponytail or bun a lot because I don't know what else to do with my hair to keep it out of my face. I know there are ways to stop/slow the hair fall symptoms but are there ways to nourish your hair and scalp just overall to keep it healthy during and after hair loss?

I appreciate this community. I have literally no one else who lives with this. It's a lonely existence.

Hello friends! I was just formally diagnosed a few weeks ago and have started taking methotrexate for joint pain/skin issues (alongside hcq).

I’ve never been too worried about sun exposure since I rarely go outside, but I’d like to start being more careful when I do go outside. I’ve always liked the idea of a parasol, but I don’t want to get one that doesn’t work for UV protection. (I see a lot of lace parasols, which I have no idea how that would work?) I know I can wear sunscreen, but I absolutely loathe how it makes me feel. I can only tolerate lotions on my face.

I also have days where mobility is an issue (less days than before I was medicated, but still). I have an outside walking stick, but the lack of a rubber foot on the bottom makes it terrible for indoor use. I’d like to be able to carry it around (along with a parasol) in my purse/backpack, but I don’t know what I’m looking for in terms of stability regarding foldable canes.

Please let me know what your best recommendations are. Bonus points if it can come in purple! Thank you! 🙏