So, after my SLE diagnosis, believe it or not, for some reason I never got a cold in the past two years. I was happy. Spoke to soon. Got one this year. And it was a very weird experience.

Unexplained. All of a sudden cold. I never ever had something like this. There were always symptoms that used to alert me before. Now? Nothing. One minute I was fine. The next? Clogged nose. Sore throat. Headache

My normal cold medicine that usually knocked me into the third dimension with sleep? DIDN'T WORK😭✋🏽I had to lay awake all night with both noses clogged. I was literally feeling like a dying victorian child.

And I got this weird boil in my ear😭outer ear. It swelled up bad first day, i thought maybe i nicked myself with a q tip or something. It hurt so bad to sleep on that side. And somehow, I slept, and i accidentally turned on that side while sleeping. And then, when I had to turn to the other side💀IT WAS HELL💀The pressure hurt so so so bad. The pain was on a different level. I never thought a pimple would hurt this much. Imagine your nose clogged, eyes burning, and your ear has this weird pimple in it. That's how my week was😭

Took me five days to clear up. My mom genuinely thought there was something really really wrong with me. Had to quit my MMF upon doctor's orders. After a whole dramatic week, I'm fine now. Thanks to nothing. It went away on its own. But it was bizzare. 100/10 wouldn't reccomend. Share your experiences. Please let me know I'm not the only one 😂

I am curious iff you guys and ladies ,..also have something like this i getting more and more problems then only skin on a side note,.. but familiar for some? Thnx in advance

Hi everyone, I have been recently diagnosed with LEP at 19 years old. I have yet to start treatment and am wondering if anyone else in this group has LEP. If so, does anything help? I feel so alone rn

I’m starting benlysta soon, and I’m worried about my history with depression and this medication. I feel like lupus caused a good deal of my depression cause I’ve had to miss out on my own life, and that’s very depressing.

I’m on Wellbutrin now and doing okay. Pretty sad about still missing out on my life, but handling it well comparatively speaking.

Has benlysta made anyone’s depression better, or at least not worse? Do all biologics come with that depression risk?

Shingles are kicking my ass. This is the fourth time.

My question is my doctor prescribed Tramadol 50mg, Valacycloir (antiviral) and naproxen. I notice some of you take Tramadol regularly. I am very hesitant to take this medication because it said it could cause constipation and nausea.
Would anyone like to chime in and let me know how it went for you?

Does the shedding stop and stabilize or will it all come out. I know it could be worse but I like hair

Has anyone in here gone through the corneal cross-linking surgery to fix their keratoconus?

I developed keratoconus about a year or so ago, it has finally gotten bad enough in one eye to do the cross-linking procedure on it. I am very anxious when it comes to eye procedures and i have a week before my surgery.

Has anyone gone through this surgery and do you have any tips or advice?

Are there any items I should purchase that would help or be beneficial during the healing process?

For extra info: I will be 34 (my birthday is the day before my procedure), I currently work full-time in an office/cubicle environment but accommodations have been made for my sight and lupus and I currently work with low lights/no lights, sounds, cooler temps etc. I have had trauma surrounding my eyes before that make me anxious about eye procedures, currently wearing glasses as I have difficulties with contacts/things in my eyes. I am aware I will have to wear the sclerals going forward and am also nervous about that.

Thanks in advance

Hi,
Ok, so once again i seem to have a chest infection, and i realised for the past 2 years, i have had multiple chest infections from july - september.
**I am in Australia, so it is currently mid winter here
I am upto date with our flu vax.
I am on prednisolone 5mg everyday, gabapentin 600mg a day, and plaquenil 400mg a day.

I did a google search and it said its possible because of the lupus, that it might be a flare attacking the lungs with the weather changes?
Or just that because im autoimmune, my body just cannot fight off the bugs.

Has anyone else had this happen?
I see my regular Dr on monday, but am not scheduled to see my specialist until end of august.

Thankyou

Sorry for the long post, i guess i need to vent. I'm currently on three Lupus meds, and my current rheum believes I absolutely have to feel better. They do help with fatigue noticeably, but some issues are getting progressively worse. I cannot lift my freaking legs. I cannot go up the stairs. My rheum keeps sending me to the neurologist, who usually sends me right back (this time, he send me for a bunch of MRIs) My primary insisted I see a new rheum he for a second opinion, so I did. I thought that a new doctor may switch some meds around, or try something new. I liked the location since it it really close, and i cannot drive too far, my leg gives up and I cannot stand heat, it is literally making me sick for hours after.

I saw the nurse practitioner today, who didn't ask for any symptoms or tried to examine me, but asked for the most recent blood work. After a few minutes of going through them she declared i may not have lupus at all. I told her I have every freaking symptom of it. I pointed on old tests where my dsDNA was flagged, and she argued it was pretty low, and it is negative now, so it is good. It is good because I am on three meds for years, I told her that. ​My joints are swollen, im in level 7 pain lately, I cannot use my left hand since my fingers look like sausages, I'm stiff like a piece of wood, I'm feverish all the time, I have rashes on my face and all over my body, my brain fog is so bad that i got lost on the way to their f-ing office in the area i drove tons of time, but my blood work is great, so I am completely and utterly healthy!

I directly asked her, if it is not lupus, what is it, then? Could it be miositis, since i got specific antibodies for it? She started saying that it could be anything, since on the panel only one miositis marker was flagged, but went silent when I again asked her , if she can name a specific condition. She only mumbled about waiting for the MRI results.

Surely, I won't go back to that office ever again. They set an appointment, but i am cancelling it. I really need to find a doctor in my area. At this point, I just don't have any strength to do it again., I went through years of trying to get a diagnosis and treatment, and the waiting game crippled me. I guess I will start looking again, tomorrow. Please wish me luck.

I've been diagnosed with lupus for almost 3 years now, but these spots have only started showing up in the last 3 months or so.

They start off as dry spots (almost all are circular) anywhere from my fingers to my shoulders, and then they turn into white spots. When I get really warm or when sun hits them, they get red and sometimes slightly raised, then fade back after I've cooled down. The pics included are about an hour after being in the sun and heat, vs this morning when I haven't been exposed yet.

They don't itch or hurt, they're just there and making me nervous. I've had tinea versicolor before and it doesn't act the same. I'm still a month away from my dermatologist appointment I asked for 2 months ago, so I'm just wondering if anyone has an idea of what it could be!

My urine protein is in the 60s which is an improvement but my c3 went down from 100 to 40 and c4 went from 12 to 5. My lupus symptoms haven’t gotten any worse but im concerned.

So I am a diagnosed lupus. I occasionally get Livedo like lace pattern on my thighs, knees and part of upper shin. It's not related to any weather change. Perhaps more has to do with how I am feeling physically . Like I was at work yesterday feeling crap. I went to the toilet and noticed how horrible my legs looked. They stayed the same till after I rested and had some nsaids. I was wondering what everyone's take it. I am not even sure if its Livedo.

I really need to find a way to inch my sleep schedule closer to normal sleep/wake hours. Too many nights of not getting asleep until 3-5am because I’m adjusting to getting on or off meds, and then not waking up until noon.

Really feeling like a vampire, lol.

If it wasn’t for the heat it would at least leave room for some nice night time walks.

nephritis** (Post title spellcheck)

I've been on Cellcept for a year now, and my doc switched me to Tacrolimus(2mg/12hrs) last week to accommodate my pregnancy planning for next year. My Nephritis is under control, and he thinks it's the best time to switch to pregnancy-safe meds if I want to conceive next year. I was reactive to Cellcept last year and was on a low dose. Now, with Tacrolimus, my body is burning. My entire back, my feet, my stomach, my abdomen, and everything feel like they're on fire. Body pain is constant. I have gut sensitivity, and I react to everything I eat, although I'm gluten- and dairy-free. I have been experiencing an increase in gas and had diarrhea between days 2 and 5. Now I don't have diarrhea, but I still have everything else going on.

Did anyone experience anything similar with oral Tacrolimus? Are there any other meds you are on that are pregnancy safe, and how did it work for you?

I want to start by saying I am a very anxious person (diagnosed OCD), but I know to trust my doctors. I know they're the ones that know the most about my specific situation and what to do moving forward. Of course I will be talking to my doctors about all of my thoughts and concerns!

I know medications that suppress the immune system can put you at higher risk of cancers.

A few years ago I had a scan done and they found nodules in my lung. Very small, doctor wasn't worried but wanted to monitor it. Got my updated scans and they hadn't grown doctor said things were staying good!

However, I started benlysta last year and this year my lung scans show masses that are very large. Grew very fast and there are a few of them. I have a biopsy coming up in a week and a half, but im mentally preparing for this to be cancer with how fast they're growing.

Would it be irrational to feel like the benlysta caused this? Has anyone reading this experienced similar? If so what was your experience.

I'm trying to stay as calm and collected as possible so I can go into this with a clear head and a lot of hope. Currently struggling with that lol but that's the goal!

For almost every day for the past 6 months, I seem to have a low grade fever at least once a day. They're about 37.7 - 38.2C (99.9 - 100.8F, I think). I think they used to come and go more, but recently they're lasting for hours and generally making me feel dreadful.

Is it damaging to have higher temperatures every day? Is there anything I can do help stablise my temperature more?

I take 200mg Hydroxychloroquine at the moment. I told my rheumatologist about the temperatures last month, but she didn't say anything.

Hello. I was dx with Lupus in January. I resisted taking medication for it until the end of June. I was doing fine... However, my Dr pressured me to take Hydroxychloroquine. I did not want to because I have a serious history of severe allergic reactions to drugs. I finally relented and took 9 days of the medication. I then started a severe allergic reaction. It has been 21 days since I have taken the medication and I am still having to take round the clock antihistamines and if I don't, I get hives, welts, severe itching, and an itchy dry cough. My question is this: Hydroxychloroquine has a very long half life. 50 days. Does anyone know at which point my body will likely stop reacting to it, such as once a specific percentage of the medication is eliminated? Or do I have to wait over 200 days? I am losing my sanity already.

I started methotrexate on Friday. I'm miserable. The nausea has been awful. I did take the folic acid. I don't want to give up on this working. Has anyone tried microdosing THC and if so, did it help?

hello! i (31F) am diagnosed with tumid lupus for 11 years now. tumid lupus is separate from systemic and contained to the skin. i recently went to the doctor for fatigue and my labs showed this. my understanding was that tumid lupus rarely turns into systemic lupus and has a negative bloodwork. Any insight?

Hi, 20M here. I’ve been struggling with very bad mental health for a while now, and ever since my lupus nephritis diagnosis about 17ish months ago it just seems like all aspects of my life are progressively getting worse and i feel like im at rock bottom. I’ve been struggling with suicidal thoughts recently with no one to really talk to.
I’ve been considering talking to my primary doctor about this and then getting a referral to a psychiatrist , but i also wanted to know if anyone else has faced something similar and if they’ve been on antidepressants or other meds to help with mental health, and if yes, has it even worked?
I know that being on lupus medication narrows down the other meds you can take, but what have your experiences been, side effects and such.
Some people might just say that im young and that things will fall into place as time goes by, but this has honestly crippled me to the point where i cant complete daily tasks and i’ve stopped taking care of myself and eating.

Hello, I was curious as to how people adjust their life habits because of lupus, is it safe to continue smoking and drinking occasionally or is it a strict no no?
Have any of you continued either of these things and noticed disease activity getting worse or there not being any significant impact? I know that some meds react with alcohol.

Hello everyone,

Does anybody have pain in their feet ? My doctor seems to believe mine are unrelated to lupus, but they always worsen in the summer, with a lot of sun exposure (sorry i know i shouldn't).

My sales lady saw my bag and was like “wow I love your bag, especially the fuck lupus”. I got excited because I thought she was *one of us*.

So I asked if she had lupus. Her exact response: “oh no, my grandma and aunt had it, they’re dead from it though” and just carried on convo - I was so caught off guard I audibly laughed.