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I take A LOT of medications. Some are for managing things that may or may not be caused by SLE. Some I take for SLE. Then I have my ADHD med and OCD med. My plaquenil was increased to twice a day a couple months ago. Turns out it interacts with my OCD med (Abilify). Luckily I was able to figure that out with one of the rphs at work after some pretty bad tachycardia and went back to once a day. However, now I’m at a point where the once a day plaquenil just doesn’t cut it, but my OCD is unmanageable without Abilify. AND pretty much everything I could replace it with interacts with the plaquenil. I feel so stuck.

Saw my cardiologist today and he asked me 3x how long I have been on HCQ. I thought that was strange but answered 7 weeks every time. We got near the end of the appointment and he says that I need to let my rheumatologist know that my EF is longer than it has been and he’s making a note in my file so they can see it along with the EKG. He mentioned they may want to change my medication which is making me sad. Aside from this, which I don’t quite understand, HCQ has really already begun to help me with less muscle and joint pain. Has anyone else experienced this? Or can you tell me about your med change experience?

Is anyone else dealing with rheums and/or other specialists disregarding PCP bloodwork, and being completely ambivalent/dismissive when the bloodwork they order comes back normal (after some type of treatment my PCP/other because who tf can afford to go six months without functioning at all), so you get prescribed "follow up in X months, we'll wait and see."

I have been waiting and seeing for months and months now...

Meanwhile, my life/career/home is falling apart, I cannot fix any of it, and I have minimal help available even for things like laundry.

I.am.so.frustrated.

hi guys

recently ive noticed ive been shaking a lot or trembling, like I cant keep my hands still and they feel a lot weaker than normal. same things goes for my legs, they seem to be so weak and i notice it a lot when i walk. this has never happened to me before and i've been diagnosed for almost 10 years. i'm not sure if this is something normal that other people get but i have an appointment to see my rhuem next week anyways and im going to bring it up.

would love to hear if anyone else feels anything similar and if they know what caused it for them, or if its just lupus being lupus

What’s the most vaccines you’ve gotten at once after diagnosis? I want to get the pneumonia, shingles, TDAP, and RSV vaccines this month but I’m not sure how to schedule them. Is getting all 4 at once a bad idea? Do I need to space them out?

I was on 10mg MTX for 10 weeks but am switching to 10mg leflunomide. My rheum wants me off MTX for 1-2 weeks before vaccination, and to wait 2 weeks afterwards before starting leflunomide. I am not starting with a loading dose.

I know we all are probably intimately familiar with medical gaslighting before we got here, but I’ve also experienced such a weird dimension of “gaslighting” from my doctors I just need to vent and see if anyone has experienced similar.

I’m (22D) currently labeled UCTD because I fall into the grey area with my lab work, but my rheum just calls it “pre-lupus” since my symptoms lean much more that way. I’m on a robust regiment of plaquenil and methotrexate thanks to my amazing rheumatologist who knows I want to go back to school and achieve all my dreams, bless her, and wants to get ahead of any organ involvement and possible disease progression. Fingers crossed, I won’t progress or differentiate.

Since I have a host of other chronic illnesses that require endocrinology and cardiology on my team, I have doctors that I’ve been seeing for 10+ years that I’ve developed great rapport with. I’m so so grateful that they seem to care so much about my progress and conditions and how diligent they are with keeping up with all aspects of my care — don’t get me wrong — but I sometimes feel like with how long I’ve been with my other docs, it sometimes feels like there’s a conflict of interest?

By that I mean that the rest of my medical team doesn’t even seem to know what UCTD is and is hesitant to accept that I may have AI involvement, almost as if their protectiveness of me is causing denial. My rheum has only known me for 6 months but she seems to be very diligent with tracking my labs and seeing me monthly and gauging my symptoms. But my endocrinologist and cardiologist both acted like I had made a stupid decision to go on plaquenil and then methotrexate, which made me feel embarrassed because I felt like I had to defend the severity of my symptoms I feel on a daily basis that is out of their area of expertise. They advised I get a second opinion, so I did — and the second rheum agreed with my first and said there’s nothing different she’d do about my treatment plan. But even then, just because I don’t have enough specific markers to be clinically diagnosed with lupus or RA yet, my other doctors seem hesitant to accept. I recently had an episode of pleurisy that has my family and rheum on edge because we were trying so hard to avoid organ involvement, and even with all my other doctors seeing the pleurisy on my record and agreeing I had it they still seem hesitant to accept.

This is just such a weird kind of dismissal in the medical field — I almost feel like it’s because my other doctors, having been caring for me for more than a decade, don’t want to accept that I am as sick as I am. I am absolutely so so grateful to have doctors who seem to care so much but at the same time I feel like it can be damaging if it ends up on the other side of the spectrum and they let their personal protectiveness over their patient get in the way of validating their patients’ care.

okay i use to love being on the phone before i was diagnosed i mean given i was diagnosed at 12 lol but i hate answering phone calls now, even if it’s family i get so anxious and just rather would say im asleep because just thinking about a conversation exhaust me but how do i explain this to someone??🫠 like is this even normal or am i just being rude like my brother says?

Crowdsourcing your experiences please!! How long/on what dosage does it usually take for you to experience prednisone side effects? Starting a 60mg taper and then on 5/10mg until I can start my new med and it kicks in. This is the longest I’ve been on it and I’m a bit nervous about the moon face and other side effects.

Have a follow up today to see how Rituximab is/isn't working. Y'all, it's my 7th medication in roughly 10 years. It does/doesn't work. I know y'all understand that. Idk guess I'm just venting. I would so love to take benlysta again - minus the whole going somewhat psycho. I felt good, no pain, no low energy - just slightly crazy. I see my friends & family my age & older out enjoying life and working and I just want to cry. I'm so tired of this stupid disease!

So yesterday, I found out one of my neighbors has a bed bug infestation (I live in an apartment).

So I did some investigating in my own apartment and found some “aggregation” areas in my recliner. There are no signs of them at all in any other furniture including the beds. The exterminator is supposed to come over today or tomorrow.

Needless to say, this is one of my worst nightmares. I hate bugs and I still have nightmares about a flea infestation I dealt with over 15 years ago. I’ve been in a state of panic all day yesterday until now.

I started feeling the flare symptoms yesterday and now they are full blown. This is the worst flare I’ve had since I was diagnosed 10 years ago. I already spoke with my rheumatologist and they prescribed me all the meds and everything. I really believe it’s so bad because of the stress. I’ve taken my PRN anxiety meds and tried meditation and journaling and yoga to try to calm myself down but nothing is working. I’m paranoid and freaking out over this bed bug situation. Logically, I know I’m doing everything I can. I’m doing everything the exterminator told me to do to prepare for them to treat my home. But I just feel so gross and overwhelmed and DISGUSTED by this whole situation. I constantly feel like bugs are crawling on me. I’m wearing myself down physically because I can’t stop cleaning and vacuuming. I’m in a lot of pain, I can’t eat, I’m nauseated, I have migraines and fevers. I need to get this anxiety under control before I put myself in the hospital.

And, to make matters worse, I am broke AF and cannot afford to pay for a lot of stuff that’s recommended for bed bug infestation. My landlord is saying the tenants are going to have to pay for treatment. The research I’ve done wants me to buy expensive steamers and bed bug silica dust and insecticide. Not to mention the tons of laundry I’ll have to pay for and bags and containers and mattress encasements…the list goes on.

Anyway. Not sure why I’m making this post. I just need to vent, I guess and my husband is getting sick of hearing me freak out. Thanks for listening.

Also - please no negativity regarding the bugs. Thank you.

I could use all the tisps I could get.

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???

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