Hi everyone,

I was recently diagnosed with lupus after undergoing multiple different blood panels to narrow down exactly what was going on with me. I go on the 30th to meet my rheumatologist to discuss medications and lifestyle changes.

I wanted to get some insight and help from people who have experienced heavy fatigue and muscle/joint pain due to lupus and might be able to help me out on things they have tried or done to help with their symptoms.

My symptoms have been very intense and almost incapacitating for over a month and I can't seem to shake it or make my symptoms calm down. Mainly I have been completely drained of energy, my joints and muscles (fingers, wrists, shoulders, knees, feet and neck) have been extremely sore and weak, and I have been having trouble falling asleep. Every other week it feels like I'm getting sick. It seems like my soreness symptoms will reduce for a day or two, but they will come back twice as strong.

A little information on me: I'm a 27 year old male, active work life in the agriculture industry, before lupus I had an active out of work life, over weight at 6'0" and 230 lbs, and I do not drink or smoke.

I know this is a lot of information and I hope I didn't break any community guidelines, as this is my first post and I just discovered the subreddit, but I was hoping to hear some information or personal experiences that I might be able to try or to consider to help out with my symptoms.

Thank you!

Found out this week that I am positive for SLE, I’ve had some severe symptoms over the past few months ranging from bad stomach issues, mouth ulcers, blood blisters in my mouth, and extreme pain and fatigue. It’s been really rough getting to this point of getting a diagnosis, and I nearly gave up as every doctor passed over my concerns for what seemed to be liability reasons. Now that I have some answers, does anyone have any insights on starting to navigate treatments and care? The flare up I’ve been having for the past few months now has been beyond awful, and I’m looking forward to hopefully getting the care I need and eventually feeling like myself again.

Does anyone else get unexplained bouts of pancreatutus? I don't drink or have a gallbladder I eat healthy. Despite all that I get pancreatutus every few years. Which usually results in my kidneys failing and a month long stay in ICU.

I just hate how my lupus is. I'm constantly carrying water weight. I did a 64oz of water a day and my legs swelled. I love drinking water. I wanted to cleanse. My weight is heavy. I just don't know what to do.

I'm on a lupus trial and don't know if I'm getting medicine or not and I went in the hospital 2 weeks ago.

I hate my weight gain so much I diet, I run marathons ever so often, I can walk very long distances and nothing. I just come back with swelling. I just stepped on the scale and cried because it says 252. I know it will be 249 or 248 in the morning but I'm tired.

When you touch the front of my legs and push on it it dents in from edema. Is edema over my entire body. I'm crying while writing this.

I'm trying to lose weight I'm 5'6 and from the medicines and everything I just feel like at this point everything is for nothing. Solimedrol, Prednisone, imuran, plaquenil, mystery drugs. I'm still swelling and my weight.

I work as well I'm a educator with little ones so I'm always on my toes and feet.

Any advice, thanks

Wow okay - I went into see my doctor for numbness/tingeling in my toes. Turns out I have two ear infections and a UTI and am in an active flare. I was feeling so badly but didn’t realize as I’m newly diagnosed and still learning what my lupus is. They gave me an “emergency shot of prednisone” and all I can say is holy cow I cannot believe the almost instant relief. I want to cry I feel so much relief. So far I have only been on plaquenil which helped mildly.

All the feeling came back in my toes and my jaw no longer hurts.

I was diagnosed 3 weeks ago so really just getting the hang of all this. My doctor was quite stern and told me to come in anytime I’m feeling bad. Anyways, I’m just rambling away now. I just can’t believe how the prednisone shot has helped me so far.

Can we take sea moss? It says it's an immune booster, but so are vitamins...

My first visit, I was seeing her because I was having a flare (my first) and naturally had some questions. The entire appointment was about how my progesterone only birth control was 100% going to give me a stroke, and soon unless I let her remove the implant right there in office. She said no lupus patient should ever be on any form of birth control no matter the circumstance (I also have endometriosis). I was hoping it was a one time thing and she wouldn’t say anything odd afterwards.

Second visit, she told me that plaquinil is not known to and has never caused any eye related side effects whatsoever (why would they test for it then)? I figured maybe I had misunderstood her.

Third visit, she told me that lupus nephritis cannot cause kidney damage or loss in kidney function over time, and the only thing it can cause is high cholesterol. Again, thought I’d misunderstood or misheard her.

Fourth visit, she was confused as to why I had been put on prednisone. I was put on prednisone because the flare wasn’t responding to more conservative treatment and was getting worse. I told her that if she has questions about my treatment, she should contact my nephrologist and talk to him about it because he probably knows more details about it than me. She said no, she wouldn’t do that.

Most recent visit, she said all my tests looked good and I was in remission. She also didn’t let me look at my test results on the computer screen when I asked. I had not seen them yet at that point. Right after my appointment with her (literally in the car home), I got a call from my nephrologist, who, looking at the exact same test results, is so concerned about my kidneys he put my on another immune suppressant. Protein level in urine shot up from 20 to 800 from a week ago. Double stranded dna was also way up from last week.

Every single visit has resulted in me having to talk to my other doctors and ask if what she said was correct. It just keeps adding up.

At this point I don’t think I can trust that the information she gives me is accurate and she’s not willing to communicate with the rest of my care team if she has questions. She is fairly young and has been practicing since 2017 so she shouldn’t be operating on decades old information, nor is she super new, it has been a few years.

I want to stop seeing her but no other rheumatologists in this hospital system are accepting patients and my insurance throws a fit if I don’t have all my doctors under one system.

At this point I’m not sure what to do. My lupus has only affected my kidneys so far. I was advised a long time ago now to have both a nephrologist and a rheumatologist throughout my life but I’m not comfortable seeing this one and right now she’s the only option. Frankly I don’t see the point in continuing to pay for her to give me incorrect information. Do I just drop her and only have a nephrologist for a bit until someone else is accepting new patients?

So I’ve missed our surgery pharmacist calling twice re bloods today and yesterday. Test taken just over a week ago. I phoned for results Monday and was told it was satisfactory by a medical receptionist which is usual process to be told results. Can’t reach them now until Friday (they’re day off tmo), and it’s tonight I’m due next 25mg injection. Anyone else had similar experience? I have had texts before to say stop or start treatment re infection. So wondering aloud why satisfactory but need spoken to. Hmm 🤔 plus 1 urine dip then but not worrying nurse said. Keep eye etc. I don’t want to make anything worse but it does help me loads. Rheumatologist started me on this 9th April from 22.5mg. Tia for reading all too :) also on HCQ 400mg and Bellimumab for 18 months and 12m.

I recently graduated from college (yay) and I’m on meds for my lupus obviously. Since I have more time now, I was thinking about going back to the gym. I used to go all the time before my lupus but ever since, I haven’t gone. I got diagnosed back in August, so it hasn’t even been a full year yet. I’m also still trying to figure out my body and what I can and can’t handle. I do work in a restaurant and that already makes me feel tired afterwards and it gives me some body aches nothing too bad. If I do go back to the gym, I’m going to start off slow and focus more on body movement. Is anyone else in that stage where you want to do something just so you feel normal? If anyone has tips on the gym or workouts they recommend please lmk. And if you do go to the gym, do you take anything to give you more energy (that’s something I’m struggling with).

Hello lovely people. So as many of us here, I’m on immunosuppressants. And I have someone very close to me that has Herpes (HSV2). I was just wondering if anyone here has been through something similar. What are the ground rules, how much contact is too much contact. And what do I need to be aware of to navigate life with her while continuing to be safe from her giving it to me. She’s so worried about me that she refuses to even give me a hug. I’d appreciate your comments and guidance!

It’s nothing bad I just need people who at least understand what I’m going through to talk to. I’ve been having a hard time (i think I’m in a flare) or I could be gettingsick you just never know and I feel like everyone thinks I’m overreacting when I say I’m not feeling well or whatever. I cancelled plans and called out of work and I just feel like I’m missing out. Whenever i talk to me family they’re like “you’re not sick it’s in your head” okayyyy so why am I taking all these pills to just stay alive and feel sane. Idk what to do but I’m just tired of hearing that and feeling like I’m missing out on life and letting people down

Hi. I have cervical dystonia, cranial neuropathies-facial neuralgias, tremors, muscle stiffness/weakness/spasms and my neurologist says likely Parkinson's.

Anyone else going through this?

I am currently on IVIG Octagam, Hydroxychloroquine for lupus, and thyroid meds/low dose naltrexone for Hashimoto’s.

I feel a tad better after 8 m of the IVIG. But I still get into several mini flares throughout the week.

My doc told me that every time I get into a flare, I’m damaging my body. I wonder what your thoughts are on that, and if you all had to make the decision to up the ante. If so…what was the last straw, and what was the difference after you doubled up?

I’m newly diagnosed for SLE. I was prescribed Cellcept 1000mg and prednisone 60 mg. I gained 20 lbs and my stomach is developing stretch marks nooooo. I’m swelling all over my legs as well. Has anyone experienced this while on prednisone? I know to stay off the salt but damn, i really like my salt. Did tapering off prednisone improve your symptoms?

I'm wondering if anyone here takes polypodium leucotomos extract as a supplement to help with photosensitivity. My dermatologist suggested I look into it, but didn't have any brand recommendations. I'm always skeptical of supplements because they're so lightly regulated here in the U.S. Has anyone used this and had a good experience? Any recommended brands?

Just offering up my support right now.

I’m in the worst flare up I’ve had in almost 5 years and the first in my new state. I had three appointments and an MRI today. I hurt so badly. But my pups came to snuggle as soon as I got home, and my wonderful husband had someone deep clean our house today, something he knew I was planning on doing in small bursts when I could. I feel like a shell of myself, and constantly worried that I can’t be enough. But I’m thankful for my little family and to have a place of comfort, which sometimes I don’t focus on that enough. Especially as I know some may not have the same support. It’s hard for us with the lups, but there’s good somewhere to focus on.

If anyone needs a friend/vent/or just to say hi, don’t hesitate to reach out. 💕

This diagnosis process has been very confusing. I went to an endocrinologist a month and half ago, and she said something about Hashimoto's but never officially diagnosed me after I had lab results showing hyperthyroidism (high T3) as well experiencing symptoms related to that - or maybe it was the UCTD the whole time? Not sure. Also had TPO antibodies, suggesting something with the thyroid.

I was experiencing a constant low-grade fever for more than a month, so I went to a rheumatologist a few weeks ago, who ran more tests that found high ANA antibody, dsDNA antibodies (740, normal is less than 200), chromatin antibodies, and ANA titer was 1:80 and pattern was homogenous. They diagnosed me with UCTD, and I have started taking hydroxychloroquine and been more mindful of sun exposure.

I'm just confused how the TPO ties in to everything. Is it caused by the UCTD or is it separate? Anyone else experience something similar?

hi all!

i got the gardasil 4 vaccine when it first came out in 2005, way before i had any sexual contact, so i should have had full protection. i have had lupus symptoms for a decade now but just got diagnosed and started plaquenil 2 years ago. 2 months ago at a routine pap, it was found that i have hpv 11.

i am wondering:

(1) have other fully vaccinated people with lupus developed hpv despite vaccination?

(2) i have seen articles about how plaquenil suppresses the kinds of proteins needed by the immune system to fight HPV. my gyno is dismissive and so is my rheumatologist- they do not care how i got it or how i will pass it. if you are on plaquenil and got HPV, how long did it take you to clear it? did you doctor do anything besides the "wait and repeat pap" thing?

thanks everybody. the idea of letting the infection fester while my body repeatedly fails to protect itself and maybe getting cancer is scary to me and im just looking for some input that isn't totally dismissive. i should also mention i have lichen sclerosus which drastically raises the risk of cervical and vulvar cancer already. lots of lupus-y things going wrong for me and this isnt the worst by any means but id like to address it. sending wishes for flare-free days to all of you!

I've been on Plaquenil for the past 4 months and it's helped a ton with joint aches and my inflammatory levels are trending down (YAY) but I still have some residual weakness and tendon pain in my hands thanks to longstanding nerve entrapment and looser joints in my hand.

I'm curious if anyone has ever done hand strengthening exercises or PT to help with symptoms? Is that even a thing? I saw some stuff online about exercises to improve mobility and flexibility in the hands but I have plenty of that haha, just not a lot of actual strength.

I had been feeling off with tiredness, nausea, and a head and body ache for the last two days but thought I was in the midst of a minor flare up. Last night I went to bed with my throat feeling a little sore, stupid sjogrens, but I woke up when I couldn’t breath or swallow laying down.

Slept in my recliner and powered through it thinking it was still a flare up and went to work feeling like crap. I looked so bad my boss sent me home and a coworker said that my symptoms also sounded like strep throat and that I should get it checked out cuz it’s highly contagious.

WELL, she was right, and I feel like my throat is on fire, hot water is helping some. Currently I am experiencing the worst chills and aches and my throat hurts so bad I can’t sleep even though my body feels like it’s screaming the need for a nap. The pills I have to take are horse sized and it’s agony just trying to swallow them and I have to take 4 of them daily.

I just want to throw a giant big baby for because I have never had Strep Throat before. Luckily my boss was understanding that I needed the next few days off because I work in the kitchen and being contagious is not a good idea around food, at least until the pills kick in

Anyone with Lupe take Mounjaro? How is it? Side effects?

My rheum said he is okay with it with my current list. I take 2,000 cellcept, 400 plaquenil, 20 lisinopril, and warfarin.

My insurance covers it just not sure about it, I don’t know anyone outside of my NP who has taken it. Side effects make me nervous

Since my diagnosis late last year I've had severe vertigo, had my gallbladder get extremely infected (I'm having that removed next week), deal with so much joint pain I'm begging for cortisone shots because plaquenil doesn't work and neither does covering myself in biofreeze, and gum flair ups. I'm sure there's more I'm forgetting.

I've been referred to like ten different doctors and sometimes I gaslight myself and think, "oh my God, am I making this up? I sound like the boy who cried wolf." but then I remember that yes, I am dealing with all of these things.

I feel like I'm losing confidence in myself to report on pain and symptoms. What do people do to feel empowered or not lose hope?

Edit: and the brain fog! I don't even think I make sense when I speak out loud because my memory is completely shot lately. I feel like I must sound like a fool, desperately trying to remember simple words or even the movie I watched the day before.

Edit: thank you so much to everyone who took the time to respond. all the thoughtful responses made me cry. I really appreciate this everyone in this community and all the hope you share ❤️

To work hybrid?

I've gotten to a point where my body just cannot do the 1hr + commute to and from. I'm constantly in a flare.

My General Practioner suspects epilepsy or some neuro stuff is going on as well.

I'm afraid to look lazy and weak. I'm not. I know that I'm not.

I'm afraid to lose out on opportunities if they arise because my employers will think that I'm not capable.

So how do I ask to work from home 2 / 3 days a week?

does anyone here experience hyperpigmentation because of HCQ? if so, is there something we can do to counter it? i have a morena//tan skin and i am looking so much darker than what i usually look like. people around me also noticed how i appear darker now than i did before i took this medicine. do you have any tips to counter it?? or is there a chance that my skin will go back to my natural color over time? since this medicine is a maintenance, i worry that my skin will look like this over time. it’s not the healthy looking tan//morena anymore. i look like a greyish tan and it doesn’t look healthy at all :/

so yesterday i visited my rheumatologist for my weekly check up and asked if i could take a biotin supplement to counter my hair loss and she told me that i shouldn’t take it anymore since it’s only natural to loose my hair because of the meds that i’m taking right now and that it will grow back soon. is anyone here taking biotin supplements on top of all the meds that they are taking? if not, what do you do to prevent hair loss?

Hi everyone, I’m diagnosed SLE about 3 weeks ago and have a consultation with a naturopath this morning. Has anyone else explored this route? I’m so desperate to feel better and want to learn as much as possible. I’m on plaquenil but may start on Raynauds medication as it is out of control. TIA

hi all!

i see my rheumatologist next week and can only assume this is worth mentioning during the appointment. i have cloudy urine that comes and goes (i’ve noticed it more in the past month if anything). no pain with it, no foamy urine, i’m not constantly going to the bathroom nor do i have difficulty. i have been dealing with a lot more dizziness, i notice it a lot when i stand up. i usually have to grab onto some type of surface to steady myself. i have no clue of the two correlate to each other but maybe it’s to some importance?

should i be scared? bc it sure is scaring me 🥲

this will be my second time seeing her. i’ve only been diagnosed with DLE, not SLE (she doesn’t believe i have SLE either) thanks :)

Last year in April me and my family went to Florida as a vacation. This was before I was diagnosed with Lupus but we knew that I would get reactions when I would get sunburns so we made sure to get a sun hat and a lot of sunscreen. At the end of the day everything seemed fine just a little red, so we went to sleep. Then at 2:47 am I woke up with my face itching like crazy, I went to the bathroom to look at my face and it had swelled up so bad I didn’t even look like myself anymore. My cheeks were very puffy that it looked like my eyes were gone. We told my doctor about this when we got home and they suspected it was a sun allergy but later on we found out it was a butterfly rash caused by the lupus and the swelling was just a part of it. Does anyone else get bad flares or face swelling?

I'm (27F) in heart failure as a result of myocarditis.

Myocarditis was suspected to be triggered by a viral infection but exacerbated by lupus. I was completely unaware of the fact that I had an autoimmune disease until I was diagnosed with myocarditis/cardiomyopathy.

Anyway, l've been on high-dose steroid infusions for the inflammation but I feel that it's making my arrhythmias worse. I'm starting to lose hope, but will likely start on CellCept this week, and was hoping to hear people's experiences for some hope.

Has CellCept improved anyone's cardiac involvement?

Thanks in advance!