1. Can you post pictures please? I have different tricks for different rashes

  2. Yes! The past month I broke out in a major full body rash, as well as developed Uveitis and was too weak to move. They finally took two biopsies from my chest and leg, 1 showed vaculoar interface dermatitis, and another was pauci inflammatory interface dermatitis. Postive for immunoflorence. I had a myositits panel run and it came back equivocal for some antibodies, which they thought could have been coincidental, but put me on 80mg of Prednisone regardless.

  3. That’s very interesting! What specifically makes them feel it’s just dermato vs lupus? I ask because I was diagnosed with both

  4. Honestly, it came down to my malar rash (except this recent one, that was textbook lupus rash with the addition of a heliotrope rash) more hugs than completely avoids the nasolobial folds in most of the photos Ive taken throughout the year. I still have that line that it avoids but its more on my smile lines. I did have perioral dermatitis for a while, esp during the earlier months last year so im not sure if that played into it any at all.

  5. I had moved area, changed GP etc I’m not sure if that has anything to do with it, i then had the mirena coil fitted and my symptoms were not present apart from mental symptoms which has led to the PMDD diagnosis, then i got pregnant in 2021 and again my symptoms are not present during pregnancy so I hadn’t been bothering my GP, it’s since my periods have returned that I am noticing the symptoms are progressively getting worse again.

  6. I think it does matter. Lupus is a disease that needs constant supervision, even if you’re not currently having symptoms. That can change in an instant. You also don’t mention if your ob was a high risk one? Lupus affects all organs and causes crazy side effects. It’s usually best for the rheum to be the main doctor you see. You said you aren’t taking medication for the lupus, why is that? Your flares may act up due to your hormone change

  7. Yes I have 4 children my last two were so I had extra monitoring etc, I had injections after my last baby to prevent clotting. I also had an episode when I was pregnant which led me to the hospital which in the end they diagnosed me with hypoglycaemia, I had a few high readings of blood sugar in a week so I was diagnosed with gestational diabetes even though my fasting test was normal at 3.6. Recently I have been having a lot of hypoglycaemic episodes even if I have eaten within four hours. Sorry rambling but my health is definitely declining.

  8. You need to take a more active approach to your health. You have 4 babies that need you. You may have a separate issues, or it may all be lupus, but not going to the doctor and not being on meds isn’t a good idea

  9. Yes but it took me 10 years to get it. I’ve had lupus since 2014 and I finally got the tag last year. My previous docs specifically said because of my age (was diagnosed at 20) even tho I have really bad arthritis and was eventually diagnosed with dermatomyosistisis which really affected my muscle. I moved to a different state and when I brought it up to my new primary she gladly filled out the paperwork and I got it. I do get stares , especially when my husband and I are out because we are younger but I’ll fight a bitch so 🤷🏽‍♀️

  10. I was started on HCQ and prednisone in Jan 2014. Imuran was added then a few months later MXT was also added. In Jan 2015 I was taken off the mxt and imuran and cellcept was added. What other symptoms are you having?

  11. Can you describe your pain? Like sore or sharp or burning? I have ulcers on my fingers so they cause a different pain compared to when the Chibs act up

  12. Honest honest 1-2 times a week. Winter is easier to get away with it. Summer forces me to shower more

  13. I really only focus on once a day. I can’t do multiple. And the once is because I can smell my stinky breath and I can’t eat food that way. Is there anything that bugs you enough to brush your teeth??

  14. I left my rheumatologist because she would not stop pressuring me to take methotrexate and I refuse to take it. I will take Prednisone to calm a flair. It’s not great for you but at least it doesn’t build up in your system like methotrexate.

  15. Did your doctor explain why they thought you needed MXT?

  16. She wants me to take it as a preventative. The one time I tried it my hair fell out almost completely. I weaned myself off it told her I won’t take it again and she still tried to prescribe it every time I went in.

  17. I had the same experience unfortunately. Have you talked about other medications?

  18. This has happened to me. The beast was dead for months and in the last month iv been so horny that I made my bf pick a day this week where we had to do the deed. No excuses and he can’t get out of it. Did some other things last night. I thought I was just weird, thanks for letting me know I’m not 😁


  20. Do you have a partner? I think I’m going to keep having my bf pick a day, I NEED IT

  21. @umkemptkitsch just because she had medication doesn’t mean she was doing well. By her own admission, as long as her labs came back ok she was ok with that. 1- we don’t know if she even looked at her labs or simply relied on her Dr to say they were fine. Lupus isn’t a disease that you should ignore, as many of us know. Their original post is not clear in what they want so I’m asking clarifying question. I’m not going to clap because they went to the Dr and took meds. The Dr could have been a complete quack and not have been prescribing the right medication, and OP not looking into what they’re talking. If you don’t like the tone I have, make your own thread on OPs post and ask/give advice in the manner you choose. I haven’t been mean or said anything rude to OP. I am educated in mental health and in therapy, sometimes the things talked about are hard. If they have avoided a large part of their health and are now asking for help, a big part of that will be understanding why they did that in the first place.

  22. Ok, but you’re not OP. It’s like when you’re little and your parents have complete control over you. That’s what OP did, Drs are the parents and OP is the kid that went along with what they were told. That’s why I’m asking OP what they want

  23. Most was like 18 plus a urine analysis. The first time it happened I was really weak and they couldn’t really find a vein and when they did, they blew and needed to have multiple sticks. The second time I was in a better position (health wise) and was even prepping the phlebotomist on where to stick me and the tricks they use to find veins on me. She had a laugh

  24. I don’t anymore. As long as there is hair, I don’t care what color it is. i have dyed my hair for 10 years, mostly red. I had pink with the greys there. I started greying at 18, and I’m 30 now and I have a spot that’s extra grey. I stopped coloring my hair 1 year ago

  25. It depends what makeup and the remover you’re using. I try to use gentle products like la roche facial cleanser for sensitive skin. I have a la girl green skin corrector and for foundation I use either tarte shape tape or Estée Lauder double wear (summer/winter color). It’s a little expensive but works very well. I also use gel moisturizer and will put it in the fridge for cooling on my face. What are you using?

  26. I was already with my partner when I got sick and diagnosed. I wouldn’t hide it. It’s a big part of who you are, what you can do. I’d put it out in the open and if they can deal, that’s great and if not, you didn’t waste so much time on them. This is what I do with potential friends

  27. Yes I agree with everyone who said DONT GO TO CLAIRS!! Go to a reputable tattoo shop they usually have piercers who do top notch sanitation and good earrings. You may be sensitive to the cheaper metal but good shops have metals that wouldn’t cause reactions. I am not sure about if the antibiotics are necessary unless you get an infection.

  28. Thank you I am so nervous I REALLY want to be able to wear earrings because I see so many that are really cute but can’t wear since my ears aren’t currently pierced. I am planning on telling them about my lupus and the reaction I had previously so hopefully this one will go better

  29. I think it will. Clair’s really isn’t the best place to get piercing, there is no way to clean the gun and they’re not sanitary. With tattoo shops, if you get a good one they are very good with sanitation and will help pick out good jewelry

  30. ESH it’s going to be up to you if you’re going to put up with this. It’s totally common from your community that the brothers have a different set of rules!! While yes she’s an adult and pays her own things, she lives at home and will go thru emotional and possibly financial manipulation If she does what you want. In their eyes, she’s not her own woman until she has a husband, you’re just a boyfriend. They probably also want to limit the chisme surrounding her virginity and at least her coming home, they can pretend she’s a good girl. I don’t think either of you are looking at it from each others perspectives, just your own

  31. completely agree. One thing i haven't done is asked for her perspective and have made it completely about me and what i want. I need to change that

  32. I do think you need to add the cultural information to your original post.

  33. plaquenil is a very slow medication.people who take it to prevent malaria take 6 pills or more and no harm happens to them.its originally for malaria

  34. I would say just disregard. I messed up dose won’t do anything to you. I have done the same thing, no need to panic

  35. I had a port for about 5ish years, I was 23-29. I didn’t mind it and it made my life easier. I have a lot of scar tissue and little veins and even when I’m hydrated they won’t work. I took it out because I didn’t think I was going to get more infusions and I ended up on ivig and rituxan. But it was ok without it. I would consider getting one again if I was having regular infusions but now just on rituxan, I wouldn’t.

  36. HCQ and steroids. Then imuran. Mxt was later added. Taken off both to be put on cellcept. Then benlysta was added. Got taken off both of them to get on cytoxan. Did 8 rounds then put back on cellcept and rituxan was added. This has been in the span of 9 years

  37. It really depends. I have a pain contract with my primary but she has suggested mmj. I also have adhd so my test would show all that plus what she prescribes. But it’s a big possibility she was told that. Not sure why you think it’s paranoia seeing as you didn’t go with her and have no knowledge about it

  38. It depends. My partner was in denial because he was processing but then was able to accept the diagnosis. Do you feel that’s what’s happening or is he very flippant about your diagnosis?

  39. I also have ILD. They treated it with rituxan infusions every 6 months and with 2 inhalers:symbacort and a steroid inhaler for emergencies. In regards to her joint pain, maybe she needs to decrease her prednisone at a slower rate? I tried a lot for my chronic pain, and have been put on buprenorphine patches and they seem to be helping a lot without narcotics

  40. Can I? yes. Would I? No. I’m not willing to go back to being a shell of a person. Overall my health in that regard is good but I’ve had other things pop up.

  41. I have panniculitis as well on my calf’s. My right one it’s like all the back of it and it’s annoying when I try to sleep because just laying down hurts.

  42. I have bumps on my legs that are calcium deposits due to my dermatomyosistisis. They’re painful

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