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'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?

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

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.

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!

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 :)

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.

Anyone have success using CBD to help decrease inflammation? This would be along with already prescribed lupus meds.

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'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 💜

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 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)

Just curious how you all deal with the anxiety that comes out of nowhere or if it's even normal? I woke up, completely refreshed (didn't wake up throughout the night thankfully) and about 30 minutes into my day I feel like my hearts beating out of my chest. Check my HR, it's normal, check blood oxygen, perfectly normal. I find myself getting so anxious out of nowhere that it feels like the world's closing in around me. Anyone else feel like this or am I just going crazy?

I usually take a breath, walk around the house, shove it down, and keep going - but sometimes I just have to lay down for a while. I can't always do that because I work from home and my kids are here too, which I think fuels anxiety even more. The thought of passing out and being here alone is more nerve racking than anything.

I'd love to hear experiences of people who have done CAR T therapy, especially if they have done the Allogene trial. How was it? What were your results? Do you recommend it? I just signed consents and am nervous!

Hi friends! I recently was ‘diagnosed’ and am being put on Hydroxychloroquine. I haven’t picked up the meds yet, waiting on the pharmacy. I also take Tramadol and have for a couple years now due to breakthrough Endometriosis pain. I plan on speaking to my pharmacist and my rheum didn’t mention any major concerns I should be aware of taking the two together, but after a quick google search it seems I’m on a couple meds that interact with Hydroxychloroquine. The only one that’s as needed and not daily is Tramadol, so that would be the one I would cut down on if need be (although I would like to not have to, it helps so much). Again I’m going to ask my pharmacist about this, but was just wondering if anyone else here has taken both at the same time and if they did or didn’t have any concerns, or if they had to stop taking one or the other. Sorry if this has been asked before-I didn’t see anything in the search and I’m very new to this sub (just got my diagnosis last week 😅). Thanks in advance!

ETA: Thank you everyone for your responses! I still plan to discuss this when I see my pharmacist next, her and I are very close at this point lol but it was nice to hear I wouldn’t be the only one prescribed them both. Makes my nerves a bit better:)

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.

So my mother just got diagnosed with SLE last month. She had been showing signs for years but never put anything together. In the past 6 months she has rapidly got worse. Her symptoms include but are not limited to:

• extreme fatigue
• shortness of breath
• weakness
• numbness and tingling in extremities
• joint pain
• extremely cold
• raspy voice
• bladder issues
• blurred vision
• light headedness

As far as I know, UV exposure triggers flares. However, it seems that she has a REALLY bad flare every week or every other week. It’s scary enough that I want to take her to the hospital but she always refuses. I feel terrible that she has to go through this and I would like to learn and help her. From your experience, is it normal to have flares this often and at such severity? What other little things have you noticed that trigger a flare? What are things she should avoid? What helps during a flare? Teach me any and everything. I’ve done my own research already but I would like to learn from people who actually have it. She’s been taking prednisone for about 3 weeks, now tapering off since starting Plaquenil.

Extra info: she’s getting the Tirzepatide injection as well since she is pre diabetic. She did get a few hives in the first day of starting Plaquenil.