Hello! I’ve just been diagnosed with lupus last September. I’m slowly coming terms with some lifestyle changes and taking things slow. As soon as I got my prescription meds I listed down and did some research on the side effects. I have been prescribed with 30 mg prednisone when I was first diagnosed and discharged from the hospital, however I am now currently tapering it off and I’m down to 15 mg.

The first few months of using prednisone I immediately noticed that I had insomnia and an insane increase in appetite, thankfully these side effects subsided when I tapered down to 25 mg. However when I started my 20 mg prednisone journey I immediately noticed body hair on my shoulders, back of my neck, some on my sideburns, cheeks and chin. I’m Southeast Asian and I admit that I’m quite hairy for a female person, the ‘normal’ body hair that I have are plenty and long but they aren’t dark unlike those ‘new’ body hair that I noticed. Along with the hirsutism I also kinda noticed that my feelings are all over the place and the hirsutism situation greatly impacts my mood when I feel down.

I don’t know what to do with these hirsutism as it really bothers me. Do i shave it or do I wait for it to be “gone”?? Do these physical side effects from prednisone ever go away?? I’m afraid of shaving the hair on my face because it might grow back thicker and coarser but it really bothers me and I feel really embarrassed and insecure about it. I need help!!

My entire body is insanely itchy, like unbelievably itchy. It's been over a week and I can't handle it! Is this a lupus symptom? I have red bumps everywhere, I tried hydrocortisone cream, and it helps a little, but it's not enough. Any advice!?

Diagnosed Fibro like a decade ago and SLE a couple years ago.

New rheumatologist (that I like) told me that I need to learn and know the difference between a fibro pain flare (doesn't require medical intervention) and a Lupus pain flare (which obviously does). He didn't however have any solid advice on how to differentiate my symptoms...

I know fibro is all pain- duh. I also know that it is the reason I feel physical pain at a much higher degree than the average person... ie stubbing my toe or similar will literally take me out of commission for an afternoon.

However, Lupus has been associated for me with incredibly intense pains too. I know some things are obviously not fibro-- like the rashes and fevers and kidney issues and swelling-- but my real question is-- without medical intervention and getting bloodwork how do I know if it's fibro pain or Lupus pain???

So I just got on this medication for Lupus with Sjogrens my medicine has never been out of stock until Now Trump was going around telling people this medication was for Covid the lies of this man are unsettling now post election my medication is on back order my tin hat is tingling coincidence I think not I hope I can get my medication I’m sick 😫

Diagnosed SLE and ACLE 2 months ago. I'm taking 200mg HCQ daily since my diagnosis.

I literally can't stand this disease omg.

Every single day my face changes. Some days I feel like it's getting better and looks less red, then I wake up the next day looking like a tomato.

Its especially bad around my eyes, some people have asked if I had been beaten up 😭.

The HCQ helped in the beginning, but it's definitely plateaued now. None of the creams recommended by my derma have helped (steroid and antihistamine creams). I wear sunscreen, a hat and stay out of the sun if I can. I can't wear makeup because I'll end up breaking out.

Do any of you guys have any recommendations?

Hi everyone! You’ve all been so helpful since I was finally diagnosed in June this year. I’ve been to two rhuem’s and the second one is the one I’ll be sticking with. She takes initiative and feels way more personal and caring when I’m talking to her.

Anyway, she wants to start me on benlysta! I just got approved and benlysta’ steam called me to discuss the side effects and warning and tell me why the first side effect they listed was casually “death” as she went on quickly listing the rest of the symptoms, which also didn’t sound the best but, um… I’m just scared now. And would love some words of wisdom, experience, hope, caution, anything. Is benlysta worth it? What have peoples experiences been on it?

TYIA <3

Been diagnosed with myositis and lupus but have been to the Gi and no one seems to be able to figure out the mystery weird fluid i keep spitting up. Do you think this is unrelated to autoimmune?? Does anyone else experience this?

Man, I’m so bummed. My lupus flares as extensive rash and thrombocytopenia generally but this time around my kidneys have been (mildly) affected and headaches.

I’ve just been on Imuran- started 25mg, up to 50mg with the goal of 100 but I just can’t tolerate it. I feel so nauseous with chills and cannot get out of bed- even with anti nausea meds. So what’s next?

Previously misdiagnosed as AS and during that time tried humira and enbrel which made the rash so so so bad. Rinvoq cleared the rash but I put on weight like crazy and leuflunomide (after I was diagnosed with SLE) damaged my liver so was taken off that.

Back on steroids along with HCQ and not sure where to next. Rheumatologist appt again on the 18th.

What worked for you guys?

Does anyone have problems with their speech when exhausted (i.e. most evenings). Usually by the time late evening comes around I really struggle to put sentences together, almost like a stutter but not really. It's almost if I can feel the fatigue/inflammation/tightness in my jaw and face muscles if that makes any kind of sense?!

It's been alot worse of late but I am off Cellcept at the moment as I had to get a vaccine. I assume it's just bad 'brain fog' so to speak but very annoying when you're trying to get words out. Usually only in the evenings but there some mornings as well recently until I get some strong caffeine into me.

My doctor suspects I may have developed Generalized Restless Leg Syndrome (generalized because it’s in my torso and arms as well) Anyone else have this and it’s related to your autoimmune condition? What do you do to make it better? Last night it was so bad that it left me sore like a bad workout.

Hello peeps, I'm one of the folks who has long been relying on the medisafe app to remind me to take my medications. Since they now charge, I am looking for a new medication reminder app for free or low cost. Are you able to help me?

I am looking for an app that: *works on android *tracks multiple medications *can track different medication intervals (plaquenil 6 days a week, other meds 7 days, etc) *will sync with my garmin watch, I want to be able to indicate on the watch that I've taken the dose *repeat reminders if the dose isn't marked as taken

So far I've tried:

pillo, which has the repeat reminders, but I can't make the dose as taken on my watch so I have to go grab my phone. Meh.

Guava, seems to meet all of the above, except the repeat reminders. So if I am not tuned in, the reminder only goes off once, and never again. I've got brain fog, I need the app to remind me, lol. This girl can't remember shizz!

Looking for help please. I'm in Canada, if that matters.

Hi,

I was diagnosed with SLE and Sjogrens back in 2019. While the lupus symptoms are manageable (primarily joint pain and fatigue at the moment) I'm having a tough time with dry eyes and mouth. I've tried Systane and Biotene but have had little to no relief. I'm now dealing with rapid tooth decay because of a lack of saliva.

Are there any solutions to deal with dry eyes and a severely dry mouth? Any help offered would be sincerely appreciated.

Diagnosed 3 months ago after 2 years of trying to figure out wtf is wrong with me! On Plaquenil full time and a course of steroids when I have to travel. Sunday was a great day. Felt so good and had tons of energy. Wasn’t nauseous and, for the first time in a long time, I had a voracious appetite. So we decided on Thai for dinner. Being a creature of habit I ordered spicy eggplant with chicken and ate the whole thing. I have read that we shouldn’t eat nightshade veggies, but I have had no problem with tomatoes, garlic, or potatoes so I thought no big deal… because I love eggplant. I am now on day two of a flare with nausea, exhausted, and a low grade fever. I’m hoping it’s not the eggplant and it’s just because it was a busy weekend after Thanksgiving… but who knows anymore!

I posted this not long ago: https://www.reddit.com/r/lupus/s/IKpR78R3gs

And now, I've got more random, painful bumps. About 2 months ago (details in link above), I grew this massive, painful and red bump on the end of my nose. It was too early to be dressing up as Rudolph. A month before that, I had a smaller version in the same spot.

I learned that it's not cystic acne, but something in relation to lupus flares and even part of the whole malar rash issue.

Now, I've got a new one on the side of my nose, and it hurts so much. But, I'm also getting them randomly on my neck, and behind my ears. They look and feel like cystic acne, but don't respond to tretinoin at all. So, I'm wondering if the neck bumps are related to my lupus flare? And any ideas on healing them? (I'm working on reducing over all symptoms, and waiting for the follup up with the new rheum.)

I think I’ve had slight reactions to certain but not all bandaids a couple years ago, but now that I’ve been diagnosed and symptomatic, I’ve noticed all bandaids or anything that is meant to stick give me a reaction. For example, a bandaid I wear for a day or so leaves red and itchiness for over 1-2 weeks. I was wearing a heart monitor for a week about two weeks ago and there’s still a slight outline, and wearing it was extremely itchy. I’m wondering if it’s worth telling my rheumatologist or leaving that question for my PCP

So my dad has degenerative disc disease & I of course have lupus, when I’m having a really bad flare and I’m in excruciating pain my dad tells me I just need to trick my mind into making seem like it’s more manageable, however this doesn’t work for me, all it does for me is either make the pain even worse or cause a panic attack or on really unlucky days both! Is this a case of my dad having a lot more experience with pain management than I do or does it have something to do with me being neurodivergent or a combination of all of the above. I’ve tried to explain that my brain works differently to his countless times but he still doesn’t seem to get it! any advice would be greatly appreciated

Hey everyone! I’m a 25 f with Lupus. I’ve been dx for 3 years now and have been on infusions of Benlysta for a full year (OMG!) I’m looking to gain some insight on others who are on infusions OR take oral medicine or any other treatment. I’ve created a survey, it’s only 10 easy questions if you don’t mind taking it!

THANK YOU!

Here is the link: https://www.surveymonkey.com/r/QH5NYCZ

SLE & Sjogrens diagnosed 7 years ago. Just started methotrexate 5 weeks ago. I have googled every thing I can. I get my first blood test next week. This is my first DMARD and I am now on 400mgs of plaquenil a day. I just don’t feel great on this drug. They say 3-6 months before you get used to it and when it starts working. I just feel very sick and “off”—on this drug. I thought it was helping. I won’t do anything until I talk to my dr but I am seriously wondering how people get thru this trial Period. Also my rheum took me off of zofran bc she said it interferes with methotrexate absorption so I am eating tums and 7 up. I am just worn out and I normally stalk and don’t post. Any encouraging anecdotes or anything will help. I am not wimpy but this has my number. Thank you.🙏

Soooo after starting what I thought would just be a month long taper 2 months ago, I’m now going to be on 10mg prednisone for the foreseeable future. I am quite nervous about this, but I recognize it has given me my life back and if this is what it takes while I wait for the methotrexate to start working, I’ll take it. HCQ alone just wasn’t enough.

Here’s the thing though, I really need to gain weight. This year has been particularly stressful, I left an awful relationship and I’ve had to move twice this year. I was mini-flaring all year which turned into a full blown debilitating flare for the past few months. Everything just made my appetite disappear, and it was also just too painful to make food most days anyway. Despite having been on prednisone for 2 months now I’m still losing weight. It hasn’t really caused any appetite increase, but I have been able to make food and force myself to eat more consistently.

Here’s what I’m worried about- I’m slowly trying to increase my food intake, and I would like to start going to the gym to get back some of the muscle I’ve lost as well as just care for my body better. I recognize this will make my caloric needs drastically higher than they are now. I’m worried about intentionally trying to gain the weight back but ending up with a different body due to the fat redistribution that Pred can cause.

Does anyone have success stories regarding weight gain and distribution while on steroids? Does new fat ALWAYS go straight to the stomach? It’s already hard seeing other body changes like hair thinning and rashes, and I’m only 24 so it’s particularly hard when all my friends are in their prime. I seriously need to gain weight but I am worried that really committing to that while on prednisone will land me in a body I don’t recognize.

I was diagnosed with SLE this March and it's been a bit of a struggle so far and a learning curve of what I can and can't do (or should and shouldn't).

Now, Thanksgiving is my favorite holiday. I go home to my parent's house each year and it's just so great to spend time with them, eat all my favorite foods, play some card games. But the issue is that my family runs an in-home daycare, which is just a cesspool of germs by nature.

After having visited and getting sick in previous trips, I was leery of going home for the holiday. But my family was super diligent and sanitized everything. Every handle, light switch, they even put out a fresh toilet paper roll. The daycare families were given strict instruction to stay home with their sick kids. So I was happy to go home with this assurance.

Had a great holiday, honestly. But on the final day there, my brother and his wife came to visit with their three kids. And I learned that their middle child had been sick earlier that week and still wasn't feeling well. There was maybe a 4 hour overlap of me visiting at the same time as them but I woke up yesterday with all the same symptoms they listed.

And I'm just frustrated. I know this is new to everyone, including them. They plain forgot. But I also don't feel like I should have to explain to adults that they should keep their sick child home regardless of my condition.

I'm left to face the fact that I don't know if I can continue to justify going home to visit and keep putting myself at risk for further misery.

I was diagnosed with tumid lupus about two years ago, but looking back the flares have been happening for over a decade. I am 38/f

I know the main school of thought is that sun exposure tends to be the main culprit of TLE flares but my experience is jarringly different. The past two flares (including one right now- December) have been during cold fall/winter months. I live in Ohio. Spots are mainly on my legs and elbows. These areas have not been exposed to the sun whatsoever. And in summer, no issues at all.

I have hashimotos, raynauds to name a few..so I know this is part of the auto immune life.

Just wanted to see if anyone had a similar experience regarding sun exposure!

Hi everyone. Sorry for asking what probably seems like a self-explanatory question, but I struggle with interoception.

Sometimes my whole body feels quite hot (no fever) and my muscles and joints can get kinda stiff and achey. Is this what inflammation feels like? I did a lot today (for me) on not a lot of sleep, and I’m wondering if it’s triggering a flare of inflammation now? I know I experience this sometimes but I can’t recall if it was usually after overdoing it for the day .

For people with tattoos and piercings, how did y’all prevent them from getting infected?

I’ve gotten my earlobes, helix, and nostril pierced and they all got infected even after I did what I was supposed to in order to prevent it. My earlobes are the only ones that didn’t close up but they get infected after a day of wearing earrings.

I don’t want this to prevent me from physically expressing myself, so any and all advice is welcome.

Recently got diagnosed with SLE and have had the hardest time trying to figure out how to deal with the fatigue. I used to use caffeine because I believed it was just general tiredness, but now that I know it's something else I was wondering if you guys had any ways you deal with the fatigue?

All I do right now is get as much sleep as I can and consume caffeine daily. I get around 8 hours of sleep on average every night but it doesn't do much to help. I don't want caffeine to be my long term solution so I was wondering if there's other ways to manage fatigue that work for you guys?

Laying here my body going through so many feels it feels like I’m tanking I’m scared especially because I don’t want my disease to be the worst case scenario I’m scared anxiety filled and I’m fighting and I hope my medicine is fighting it’s like my body is killing me and it’s terrifying oh here come my tears 😭 God didn’t make no mistake and chose me I wish I was prepared in a way but no preparedness would have done any justice my own body is now my enemy oh and the sun and anything bright as well. I just fell defeated oh and I have Sjogrens as the icing on this cake I feel scared 😱

Hello— I have a terrible brain fog where I feel like I haven’t slept or have a horrible hangover all the time. My memory is fine, but I just feel like I’m living in a bad dream where my surroundings seem off. Is this something others have experienced with lupus or UCTD, and if so, has anything helped? I am thinking of going on Plaquenil but would love to know if it has been helpful for people with this particular symptom?? I have two young children to raise so I’m desperate to get rid of this fog. (And no, it’s not anxiety!). Thank you to anyone who has any advice!!