1. I agree with the colchicine recommendation. It’s usually started at 0.6mg/day, but there’s some wiggle room. Also NSAIDs. Talked to my rheumatologist and she said that sometimes long term prednisone use can make it worse. Also, the nerves around the pericardium and the heart can start sending false signals, making you feel pericardial type pain, but not actually have active pericarditis (let’s face it, who wants to have a CT or MRI every time they feel that type of pain to confirm if it’s active? I’d by glowing or magnetic by now.).

  2. Anything with ceramides was my derm’s recommendation. Cerave has three different ones, but it’s not the only brand. They have a pretty fantastic anti-itch line, IMO. I think it’s steroid free, so if it doesn’t work for you, you can always try a cortisone cream/ointment next. Or aloe with lidocaine in it. You can keep them in the fridge so they’re cooling when you put them on.

  3. Hi, a lot of the test you’re asking for, my rheumatologist didn’t run. My blood work has been getting higher. For instance my WBC went from 5.6 to 9.4 in two months. My RNP is .5 Anti dna is a 1. Beta-2 I have 3 results <9, 11 and <9.

  4. A wbc of 9.4 is still considered normal. Fluctuations like that are completely normal, that’s how your body should respond to pathogens you encounter in your day to day life. WBC counts tend to be low in SLE, like less than 3.

  5. Thank you for responding- so should I be worried about the antigens detected and the suggested disease association?

  6. It’s hard to tell anything other than a positive ANA from how your labs are laid out. I can’t see what your results were for each one compared to a reference range. They aren’t universal, unfortunately. Homogeneous ANAs are the most common pattern seen in SLE, but it’s also just the most common one period. The other descriptions are for the other patterns and the diseases that they may correspond with, but it doesn’t look like those apply to you.

  7. My last urine test was in early December and then I got a Kenalog shot on December 28th because I just couldnt walk and I was miserable. Does a kenalog shot cause urine problems? Because I didnt notice any foam before I got the shot.

  8. Kenalog is a steroid. It’s actually used to treat renal issues, but it’s always possible to have a paradoxical reaction.

  9. ….I had UCTD for a decade. That, and my astounding family history of lupus, made acceptance of the diagnosis fairly easy. What wasn’t easy was how much more severe my lupus is than my mother’s. Mine’s more on par with my aunt’s, and she died at 18 in 1970 due to lupus complications. Accepting the limitations this disease has placed on me, having to change jobs, all the pills, doing weekly injections and STILL being in pain, knowing that if I attempt pregnancy again I am literally gambling with my life…. Every goddamned week something new cropping up. It’s exhausting and it feels endless.

  10. Ya thanks. Ive had quite a couple years and been studying a lot of different things to cause blood clots but nothing seemed lupus - like - than that test showed up positive. Weird

  11. It is possible to have primary antiphospholipid syndrome. It is another, rare autoimmune disease. About 45% of SLE patients also have APS, but it can happen singularly.

  12. Thats always seemed to make the most sense to me. Hematologist did a whole work up and i had a “slight positive” IgG but the hema said it was nothing.

  13. Yes, that’s used to test for lupus anticoagulant, a poorly named antiphospholipid antibody (doesn’t mean you have lupus or are at risk for bleeding, just an ass backwards naming).

  14. If I’d had full blown SLE when I was a student…good lord.

  15. Not crazy. Just search for lupus and hormones or lupus and menstrual cycle and you’ll see TONS of posts on the sub. Some women notice it worsens at ovulation, some right before their period, some during, or a combination. It’ll probably be at a repeated point in your cycle for you, but may not be exactly like another submember’s. But yes, estrogen is a huge PITA. A lot of lupus patients notice improvement in their lupus when they hit menopause….

  16. What’s really interesting that I was diagnosed while transitioning to menopause at age 51–and my neurologist actually wondered if the hormonal shifts I was experiencing was a trigger—my sister as diagnosed with SLE in her 20s so the genetic factor was there. Frankly, I was shocked that I could develop it at my age because I always thought of it as a “young woman’s” disease.

  17. And that is completely valid. It’s hard to say much of anything in medicine is 100% always going to happen or have the same result barring some catastrophic injury to a vital system.

  18. Yeah I get what you are saying. I think people are desperate for an answer that could lead to a treatment to alleviate their symptoms. Not sure why people get stuck on lupus though. Like who cares if it's UCTD or lupus if the starting treatment is the same?

  19. I think I see what you’re saying. Either way, people just want to be heard. Those in the middle of the diagnostic process want validation that they aren’t batshit, that these symptoms are happening to them, what symptoms are considered normal and when it’s time to actually call their doc/go to the hospital. I do understand that ED visits and whatnot cost money and a lot of people don’t want to go unless they actually need to. The diagnosed can also get protective of that status for a similar reason: they were finally taken seriously, finally a doc somewhere listened and investigated and found the lupus monster. So there may be a gatekeeping aspect because the diagnosed don’t want the seriousness of a lupus diagnosis to be belittled and tarnished by those that seem to be disability fishing.

  20. "Someone hold my sweet tea," rolls up sleeves. "Alright kids, let's have story time."

  21. no. flare started in august/september, asked for prednisone, they scheduled me for an appointment in november. what happened between then? a two week hospital stay from an ER visit and a lot of suffering. she came to see me in the hospital (I usually see her outpatient) and she ALWAYS uses the “well prednisone is just SO dangerous, you’ll end up with insert million long term prednisone side effects and that would be a lot worse than what you’re already dealing with” and I’m so frustrated right now!! like yeah pred is pretty bad but you know what’s also bad? dying. lupus. she’s definitely one of the more anti prednisone rheums but she refuses to come up with an acceptable alternative. so frustrating :/

  22. ...I literally can't give hard enough side eye/duck face....

  23. Hugs, my friend. Vent away. This just sucks, there's nothing else to say, really. I hope the Mayo Clinic can at least get useable data from the study. You are being a lab rat for all of us, and I, for one, am deeply appreciative. I will be keeping you in my thoughts and hoping for a positive outcome for you from this study.

  24. WOAH this is so helpful! I didn’t even think about the fact that my chronic illness laundry list might distract from the issues at hand. Thank you!!!

  25. You can definitely mention all of them if you feel they are relevant or interfere with your day to day activities, but at the top of the list I would put which of the diagnostically relevant SLE symptoms you are experiencing. Then of your remaining symptoms, I’d do the top five that are the most problematic within the last six months. Answer The Who/what/when/where/how about your symptoms. When did they start? When do they happen during the day? What makes them better/worse? Who, in this case is the symptom, and be as specific as you can (like I have a sore throat only on the right side of my throat and it only hurts when I swallow. Believe it or not, there is a joint in the throat and you can get arthritis there. Fun stuff.) Where is the pain? Does it radiate anywhere? How does the pain feel? Is it sharp, stabbing, dull, achy, intermittent or constant? A doc is like a detective. The more clues you can give them, the better chance they have at figuring the issue out.

  26. Wait a minute, trouble swallowing in certain positions and localized sore throats are a lupus thing??? You’re seriously doing me such an amazing favor here, thank you. Would you be okay with me PMing you my notes before I go to my appt?

  27. If her lupus is that serious, she’s way beyond supplements having much of an effect. Honestly, if her liver function is shit (elevated ammonia), even turmeric could be dangerous for her. If she’s that ill, she needs to be seeing her docs regularly and frequently.

  28. We could speculate until the cows come home. You need to ask your rheumatologist, honestly.

  29. I did vascular stepdown, then went to ICU. It was while I was in ICU that the SLE reared it’s ugly head. After much debate and a lot of playing around with meds, I had to leave bedside (3 immunosuppressants isn’t a good combo with vented Covid patients). I do insurance for the hospital’s BHU now. Not a turn I expected in my nursing career. I don’t miss the physical aspect of bedside nursing (Q2hr turns on a 400lbs sedated and intubated patient, or the cleanup after tube feed poops, no thank you my fingers are screaming just thinking about it) but I miss the hands on care, getting to talk to patients, doing active things to help them get better. Sitting with them and holding their hands when they’re scared. Making sure the dying don’t die alone and in pain. Step-down (the one I worked on was hardcore ICU lite) and ICU, shit gets real, real fast.

  30. Yea the stepdown I worked on was ICU-lite, just about everyone was trached and pegged but I enjoyed float pool more. I have no desire to be in the high stress environment of the ICU.

  31. Didn’t help that they were two drastically different unit cultures. My old stepdown unit was the shit. Everyone helped everyone, always encouraged to ask questions, it really was a nursing utopia. The ICU I worked in…. Yeah, definitely had some people who were sink or swim and would set you up to fail. That didn’t help the stress either.

  32. I have been actively sick for ~12 years. I lost track of the # of vials of blood around 4,000 and that was six years ago or so. I suspect that I am over 10,000 now. Not to play "mine is bigger than yours", but rather to establish a baseline of the relative frequency with which I get blood drawn.

  33. Accuview vein finders are only good for the most superficial of veins, which are extremely hit or miss on how well a rapid-ish infusion can be tolerated. They also don’t work nearly as well on people with a rosy complexion. Ultrasound is much better in picture quality and finding a nice fat vein. Bigger vein = more dilution from blood so theoretically the infusions at least won’t hurt as bad. Bigger vein also means a higher volume can be infused, so the infusion may take less time, or it might be able to be diluted with something like saline for example.

  34. Ports come with their own issues (infection, clots, flipping over and more). Also, other facilities WILL NOT automatically access it for labs, etc. You will still be stuck everywhere but the infusion center.

  35. Honestly, that sounds like vertigo to me, but I’m NAD. To say that it’s unpleasant is an understatement. I’ve had two full blown attacks where I can’t get my eyes to focus, I feel like I’m spinning out of control, vomiting, the whole 9.

  36. I mean, honestly if you think you’ve had a seizure, you need to be evaluated by a professional. That’s all there really is to it. In the end, what we think doesn’t matter. We weren’t there. Just for your peace of mind, if nothing else, I would recommend following up.

  37. I'm a family med attending. Wasn't diagnosed with lupus until last year, and it truly only came about due to pregnancy complications that resulted in a stillbirth. Otherwise I was asymptomatic. Not sure how helpful I can be but I always like to reach out and be a support to others, as med school/residency is a whole different level of grueling.

  38. Thank you for the detailed reply, along with Nanky2014 and BeautySprout! I’ve been doing my own research, but I noticed a lot of the study results and statistics focus on a doctors perspective and not a patient-oriented one. I guess I kind of got it in my head that you (general you, not you you) either always had it and they just couldn’t find it, or you didn’t at all, ever. The idea that autoimmune can progress from nothing or something small into more never really crossed my mind, but in retrospect it makes a lot more sense now. I think I’ll stick with the UCTD label and go from there, and if one day I “upgrade” to a more definitive criteria then I’ll go by that.

  39. Write down exactly what you want to ask your doc when you think about it. The number of times I think I’ll remember to ask/ask fully….🙄 Brains cannot be trusted.

  40. I’ve been where you are. God, one shift when I was still a bedside nurse I was in tears because my elbows were so painful, swollen, and hot to the touch. I took my butt to the ED and told the doc I have lupus and was having an extreme pain flare up. Asked for IV solumedrol and toradol (can be a little hard on the kidneys, but it is the jam when it comes to NSAIDs) ‘cause that inflammation needed to be knocked down something fierce. The morphine…eh, didn’t really do much for my pain, but it did make me stop caring about it and focusing on it so much, so 🤷‍♀️ potentially helpful.

  41. We did. It’s the read the rules and the weekly undiagnosed thread.

  42. I’m a fan of option 2, FWIW. I feel like I should just have a “Get a Biopsy” stamp. I understand people are concerned. Ultimately, if OP is concerned enough to be asking for advice, they need to ask a professional. I also understand that not everyone has equal access to healthcare, but there’s nothing we can really do through the internet. Our word isn’t suddenly going to have more weight than a doctor’s.

  43. To be super cautious, I would recommend a copper iud first and progesterone only hormonal birth control second. These aren’t necessarily the only options, just the absolute safest as far as blood clots go.

  44. I left a message with my rheumatologist yesterday and he called today. He said that because there's not much wiggle room with my kidneys, I'm to go back to one Plaquenil per day, and he's going to add immuneron (sp?).

  45. Probably Imuran. Azathioprine, it’s an immunosuppressant originally developed for kidney transplant patients. I’ve been on and off of it for about a year. Only went off for a short while because my wbc count tanked and I was working in the ICU with vented Covid patients. Been on it again for about six months (and benlysta) and my labs are starting to look better.

  46. That's encouraging! I really appreciate your input. Your first reply calmed me down a lot too.

  47. It’s all scary. And doubly so when you don’t have the context a lot of us healthcare workers have. You see red on your labs and understandably freak out. Hell, I still freak out for a second when I see my own abnormal labs. But it’s take a step back and put things in perspective. And with new meds, it’s understandable that you’d jump to the conclusion that they’re the culprit. And sometimes they are, you’re not necessarily wrong to jump to that conclusion in the first place. But when you have a little more context of the disease and the meds, it changes the picture.

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