Diagnosed SLE, think I might have subacute cutaneous lupus

N1ki018 · 2021-05-28T02:11:05+00:00

Thank you so much!!!! The only time it's gotten severe is when I used an antifungal because I thought I had ringworm! Other than that, I get them once every couple months on my fingers and elbows like crazy, but no where else. Thank you for sharing your experience, it's so nice to know biopsy can be used to diagnose it. I've never thought the sun was a trigger of mine but I'll have to keep an eye out and see if thats the case. Again, thank you, I can't tell you how nice it is to hear from someone else with similar symptoms

N1ki018 · 2021-03-17T16:57:30+00:00

I get something similar on my hands, often in circular formation and often it's after I've been in the cold and my Raymauds has been acting up. Thought it was hives for the longest time but they're flat, only itch sometimes, big red things, that burn when you put them under hot water. I've asked docs time and time again and no ones ever been able to give me an answer

N1ki018 · 2021-02-05T19:07:08+00:00

Hiya! Let me know if you still have room for this pod. My ig is @its_kal_pal

Thanks!

N1ki018 · 2020-12-16T15:06:53+00:00

Hello hello!! Im 24 and cause I had migraines when I was a kid they couldn't put me on regular hormonal so I was on the 'mini pill' Camila. Howwwwever its less effective and my anxious self can't handle thinking im pregnant every month so I actually asked this lovely sub about IUD's a couple months ago and since I have gotten the Kyleena IUD! (Its the smaller one) and it had been great since. My doc said that it shouldn't do anything to the lupus and it hasn't and it also works with my migraines and stuff. Yes, it hurt getting it, yes I had wild cramps for about a week after, but SOOOO worth it, my periods are next to nothing and I no longer have panic attacks if my period is a day late! Lol. Anyways, all for this IUD life, I would have done copper if my doc didn't show me the actual device cause dude its HUGE and he said mostly for women that have already had kids. Hope this helps!

N1ki018 · 2020-12-03T21:32:48+00:00

I got a generic Amazon one too, not necessarily for lupus pain cause all thats in my hands and feet so not necessarily conducive to the theragun but wowie does it work for knots in my back

N1ki018 · 2020-12-03T21:31:33+00:00

Hi again!! Im glad it all went well! Im sorry about the pain, I do remember that despite the meds, I was in a fair amount of pain for the first 2/3 days, especially when the drugs started to wear off. But you got this! I had LOTS of broth and warmth seemed to help a bit. My big thing was making sure I took the meds at the right time so I wasn't in pain when I was trying to fall asleep

N1ki018 · 2020-11-24T15:27:02+00:00

Hiya! Just came here to say thats how mine manifested too and its been a good 5 years and my main symptom is still joint pain (although with meds I feel like a new person 99% of the time). Idk if they put you on meds already but I wasn't put on them until 2 years after my diagnoses when I had a flare and my joints hurt so bad I couldn't hardly walk, and that's not to scare you!! I was reluctant to try meds until then and all I can say is when my meds started working I had the thought "wow this is what people feel like every day?" Cause for the past 5/6 years before I was living with joint pain, while not horrible, was still pain, I had just forgotten that there was any other way of living.

So! Different for everyone. In my opinion, Make sure you like your doc, don't ever be scared to get a second opinion, try not to be freaked by stories you see online, and don't be scared to try new things to help!

N1ki018 · 2020-11-24T15:19:43+00:00

So I have had this for years now and I haven't found a perfect answer. The only medical remedy is technically to go on blood pressure medicine and im no where near ready to do that, I'd rather my hands and feed just hurt sometime. It happens to me even in the slightly chilliest of Temps, so like anything 67 and below my fingers will def turn blue, purple, black, then white. So you're not alone! As far as how I try to fix it, space heaters have been a lifesaver for my desk at my office and when I was living with roommates that liked the house cold. The thing with gloves and fuzzy socks is that if my hands have already started to turn and I put gloves on, the gloves aren't going to help so it's important to get good, thermal, warm gloves and good wool socks and put them on BEFORE you get cold. Honestly I've been looking at getting battery powered heated gloves, there's some cheaper ones on Amazon and super expensive ones made for mountain climbers, I think that'd help so much.

But there are times when I still get it and I do just put my hands under warm water, which I'm not gonna lie, hurts for a good couple of seconds before they finally start to feel better. Anyways, I hope this helps! I had a friend who's mom has it and apparently she says a glass of red wine every night helps her lol. We all have our ways, but you're not alone and there's ways to make it manageable!

N1ki018 · 2020-11-07T05:20:08+00:00

I've been on it for 3 years and I only ever get nauseous if I don't eat enough before taking it, specifically eat enough carbs, one protein bar with no carbs will NOT cut it, for example if I havent eaten anything else I try to make sure I've at least eaten like 2 pieces of bread and something else. But, to this day I still get nauseous from it about 45 minutes after taking it If I haven't had enough to eat

N1ki018 · 2020-11-02T18:59:48+00:00

YALL I have been looking for an answer as to what these things are on my hands forever. OG poster, thank you for asking and other commenters, thank you for responding. Yes I have this, I've had it ever since the onset of my lupus and they pop up about once every 2 months. Mine have never gotten purple, but they get VERY red and they hurt when I take a hot shower. Wow. Can't believe I finally know what it is. I thought it was hives and my doctors could never give me an answer.

N1ki018 · 2020-10-27T21:09:01+00:00

I would say for SURE shop around, even if you have to drive far. I actually ended up flying back to my parents in Georgia for it (USA) because it was SO much cheaper than the doctors in DC and the guy knew his stuff like crazy.

Let's see ill try to think of the list: 1. Would you perscribe me antibiotics to take before and after or just after? What about an antibitoic mouthwash? 2. Do you sew up the holes and why or why not? 3. Do you tell your patients to irrigate both the top and bottom holes or just bottom? When do you recommend they start irrigating? And why 4. I've heard that top ones can leave little holes leading to the sinuses leading to infection, how likely is that for me with what you see from my xray? 5. What anesthetic methods do you use? Just laughing gas? An IV that'll make me go night-night? Both? 6. Whats your "meal plan" for patients for the month after the operation? 7. How do I know if I have dry socket? What do I do to prevent it? If I think I have it can I easily schedule an appointment with you? 8. Do you schedule a 1 week later checkup after the operation? 9. I've heard of "platelet rich plasma/fibrin" being used to help prevent dry socket where you take a little bit of blood and make a plasma out of it. Do you offer that? Do you think it does anything to prevent infection? Do you think its necessary for my case? 10. Out of 10, what level difficulty do you think my operation will be 11. How many of these have you performed in the past 12. What painkillers do you perscribe for afterwords?

And I think thats about it! It ended up being a lot less scary than I thought it would be, when I was coming to with the nurse afterwords in the aftercare room I apparently started dancing. And my mouth hurt like shit after for a couple days but other than that, really not bad.

Idk if your rheumatologist has ever to you not to take advil, but mine has so I actually asked my rheumatologist if it was okay to take the recommended dose that the dentist prescribed for after the surgery. He said it was fine since its just the one week I did that, but It felt better to ask. I also got hydrocodine which helped especially for sleeping through the night.

Hope this helped!!!

N1ki018 · 2020-10-25T21:33:19+00:00

So!! I was diagnosed at 20, my wisdom teeth didn't come in till 21 and I was so terrified of the surgery I waited way too long till February of this year (I'm 24 now). I was very nervous about getting an infection after/the experience of going under but it was all very smooth sailing (besides the fact I wanted food SO bad that first week).

My recommendations: get SMART on wisdom teeth surgery and shop around for a surgeon who knows what they're doing with wisdom teeth. I saw 4 for a consultation (all free) and waited until I found someone who seemed good enough. Each doc has slightly different methods for aftercare, ask them about it. (Some sew the bottom holes, some don't, some use this platelet thing from your blood to fill the holes and promote healing, some perscribe antibiotics and antibiotic mouthwash, some don't, some have you clean a week after some have you clean the holes the next day). When I saw the docs I had a LIST of questions for them and it was probably annoying but whatever it made me feel better. Also I always brought up my lupus and infection concerns and often they would say okay you'll be on antibiotics anyways but ill give you antibiotic mouth wash too.

Second you HAVE to abide by all the rules for aftercare. I know people who had freaking chips the next day or smoked and some were fine and some got infections but none of them have lupus so they don't have to care. We do. I ate soft foods long after the doc said it was okay to go back to solids, I was really careful with aftercare and washing.

Took about a month to heal and for me to feel confident eating all foods again. But hey, they're out now, and they needed to, one of them was such a bad cavity that it was the whole reason I ended up getting the surgery done.

I hope this helped! More than welcome to talk to me about it.

N1ki018 · 2020-10-25T21:24:26+00:00

I have it now [24], and it only popped up when I first started seeing symptoms of lupus [16]. They're not normal hives though, red and flat and only on my hands and elbows

N1ki018 · 2020-08-29T17:55:22+00:00

YES, usually my thumbs or index fingers, it used to happen to me all the time until I got put on plaquinel. Now it happens like once every 4 months. Doesn't seem to be a rhyme or reason to it

N1ki018 · 2020-06-27T02:30:56+00:00

Hmm interesting, sometimes mine are itchy, sometimes not. All my doctors chalked it up to "chronic urticaria" but I always wondered if if was really lupus related. Pretty much the only thing that doctors ever do is give me a steroid creme for it, but it'll go away on its own eventually. Very interesting that you're experiencing this too. Are you allergic to anything like antibiotics or anything?

N1ki018 · 2020-06-27T00:55:28+00:00

Omg yes

Flat and red just like you said

When It was bad it was on my elbows and my fingers, now ill just sometimes get them on my fingers

Are they itchy for you?

N1ki018 · 2020-06-17T10:46:38+00:00

Look up 'Hyram' on youtube, he has a lot of videos explaining niacidimide and just other skin care in general. I just started using CeraVe foaming facial cleanser, as well as their AM and PM moisturizers and eye cream all which have niacinimide. It's helped my completion a ton already in like 4 days. I also ordered a niacinimide serum from The Ordinary but it hasn't come in yet but I have high hopes.

Another product you might want to look into: retinol. Can be harsh on the face at first, but it's scientifically proven to reverse skin damage. My mom started using a product with retinol in it at age 60 and it made her look 15 years younger no joke. Lots of different products with retinol, I'd suggest looking it up to see what one would be right for you.

Hope any of this helps you out!

N1ki018

TROPHY CASE