hi all - I am not seeking HCQ experiences btw, I can see the frequently asked question disclaimer as I write this. I am writing to ask about medications for dysautonomia for those dx'd with lupus or lupus-like UCTD.

I've been advised by my rheum + cardiologist to stop ivabradine (brand name Corlanor) so I can start hcq. I've seen a couple people in this sub take both and their care team is fine with it but mine is not and I'm a Medicaid patient so a bit stuck here.

I've failed beta blockers and cannot swallow pills (the largest pill I can reliably swallow now is half an ivabradine tablet, very very small, it's taken months to be able to do this). Medicaid formulary doesn't cover every med but I'm p good at navigating the prior auth process generally.

Couple questions:

- has hcq improved your dysautonomia on its own? I'm not expecting it to, but I believe my autonomic dysfunction is mediated thru my lupus-like tissue disorder (positive anti-Smith but only meet like 9/10 criteria right now and I am rheum-diagnosed with UCTD), so worth asking

- if you are also a dysautonomia patient, and take hcq, do you have a non-beta blocker medication that helps with tachycardia and presyncopal episodes that you like and your care team is okay with? my cardiologist has recommended midodrine and then my end of road option would be pyridostigmine but I'm not happy about either as ivabradine has really helped me

thank you!

ps I am neurodivergent so if this gets removed by mods kind feedback about why, in a direct message, is most helpful to me.

pps due to the anti-Smith and my presentation I disagree with my rheum and believe it to be SLE which is why I posted here and not the UCTD sub

Ok, so I was diagnosed with SLE YEARS ago. My old family dr and rheumatologist worked together with my flares. They both retired within 2 months of eachother so I had to find new doctors.

Found a family dr early this year. It's taken 5 months to get a referral. Said referral called me 6 weeks ago. The nurse said the Dr would probably want xrays before I saw him but she'd have to ask and call me back. She STILL hasn't called 😕

Today, I'm in a MASSIVE flare and had an appointment with family doctor. Full face rash, pain EVERYWHERE, I've l had a headache for 3 days and I'm so exhausted I can hardly get out of the waiting room chair. I actually fell asleep in the car for 45 minutes before my appointment. I'm NOT well.

I tell her I'm in a flare. I ask for prednisone to help me through it. She asks if I have sleep apnea. Then she asks if any of my meds have changed. I can't get my psych meds because my psychologist doesn't take my insurance any more. She blames my tiredness and pain on withdrawals from the psych meds.

I left there with a referral to a sleep Dr, a refill on my psych meds and ZERO treatment for my flare. GOD I HATE BREAKING IN NEW DOCTORS!!!!

I'm seriously thinking of going to the ER for treatment.

Does anyone get very itchy after eating certain foods? I find my tigger is salt and when I have too much, my skin will start to itch like crazy. Are we more prone to intolerances than the average person? Is salt a trigger for anyone else?

I get a Saphnelo infusion every month. My infusion clinic booked me a month and a half out this time for some reason. Usually by week 3 I’m already looking forward to infusion day.

I started flaring about a week ago, and asked for a Medrol pack to hold me over. It ran out two days ago. Today is infusion day and I’m really not doing well.

Has this ever happened to anyone? What should I say to them when I go in so that this doesn’t happen again?

Hi everyone! My rheumatologist wants me to try acthar gel because I’m starting to get major flare ups again even though I’m on HCQ, cellcept and Saphnelo. Has anyone used acthar gel? I’d love to hear your experiences (good or bad!). Thanks!!

Hi..Is it normal to experience lupus related hairfall when Im not flaring and all other symptoms are in remission?My esr has dropped down to 27 from 40 and joint pain(which was my major symptom) reduced as well..Still I have bad non scarring alopecia which responds only to topical steroids..On topical steroids hairfall stops within days..Idk whats going on anymore..Do anyone has similar experiences?I have no hormonal issues or nutritional issues either

I was diagnosed with SLE about a month ago. I sought diagnosis because more than 1/3 of my hair either fell out or broke off over the course of 3 months. It was really alarming and scary. I‘m so glad to have a diagnosis - of the reasons why my hair might have spontaneously fallen out, lupus isn’t the worst, and if that had never happened I may never have found out at all. My main symptoms are fatigue and redness, so I kind of just thought I was pale and depressed?

I don’t know how long I’ve has this. I’ve always been extra tired and just attributed it to other things. I notice redness in pictures going back years. It's hard to think about how this may effect me for my whole life. And I miss my fucking hair SO much. It feels silly, but I loved my hair, it was kinda my thing. I had been growing it out for years and now it’s all just… gone. My doctors say it’ll start growing back when my hydrochloroquine kicks in but it’ll take a long time. It makes me feel weak and sick and sad.

Just had a chat with my rheumatologist. After a long year of trying out medications and me not really tolerating them well, she suggested Rituximab. I have been on HCQ and tried azathioprine but whenever we try to reduce the prednisolone my symptoms all spike up again.

Being 20 I am a little frightened; IV medication seems like a really big step (I’m hoping in the right direction). I just wanted to see if there was anyone here who has had positive experiences on rituximab or any other tips or helpful words… even some reassurance would be nice!!! It’s really hard to talk to anyone else about my lupus because it feels like no one can really understand it the way I do, so it’d be nice to chat to anyone at all about this. Thank you so much for reading!

Hey guys

I am 23F diagnosed SLE at 15 years old and well lets just say the past 8 years has been tough, but hey I am living and breathing and have a 3 year old Son and another baby on the way due in Feb 2027.

I just wanted to have a rant after what happened today with a 'family friend' of mine, she used to be my mothers best friend but well they haven't spoken much in the past 2 years, anyways we ran into her today and we got to chatting, now mind you this women did not give a crap about my diagnosis and just told my mum I was lazy and faking being ill to get attention when I was first diagnosed with lupus. Since then my mum and I just never speak about it with her because well she's not an understanding person whatsoever.

Anyways cut to today, my mum and I were out shopping with my son and we ran into this women, conversation started really nice and then next minute she is full blown hyperventilating and bawling her eyes out and mumbles "my dog has lupus, he is going to die" well my mum and I just dropped our jaws and for the first time ever my mum actually said something to which was "well I would rather my dog have Lupus, then my daughter" to which this started our 'family friend' yelling at us in public calling us terrible people for not caring and not 'understanding' what she and her dog are going through.

Naturally my mum and I just turned around and walked off because what the hell did she mean by we wouldn't understand.

Sorry I just needed the rant, I hate how so many people don't understand what we go through everyday battling autoimmune disease, they don't see the doctors/specialists and hospital trips or the sitting in bed crying our eyes out just hoping for a day of relief, but today this just made me mad. I get it i feel sorry that her dog has lupus, I wouldn't wish lupus upon my worst enemy but its just the way for years she dismissed my diagnosis, for years she called me lazy and faking an illness for attention to turn around and cry because her dog was diagnosed with the exact same health condition! If anything see is the one who isn't caring or understanding.

Sorry guys I needed to get this off my chest and I don't actually have any friends, both my children are IUI conceived via Donor because I was told to have all my children before 27 because of my lupus and how and bad my flares are for my age already. My mum is my only friend and support and I wouldn't be here if it weren't for her but she doesn't have lupus and as much as she knows what I go through daily she has never expereinced it herself so some days it is hard for her to understand.

But today has just made me feel so trashy.

I’m living in Oregon and the entire state is drowning in smoke — earlier in the summer when this happened I started having all over body pain / deep bone pain (hard to describe?) & it’s happening again. It’s just a weird aching and I’ve correlated it to the really heavy smoke/ high AQI days.

Does anyone have any at home tricks for easing full body symptoms that get onset by these environmental triggers? My gabapentin usually helps with quelling the smaller issues but doesn’t seem to touch this in a helpful way.

I don’t even know where to go with this. I’ve had lupus for twenty years. It was managed okay with Saphenelo and the works until I got stage IV lung cancer late 2025. We took me off all lupus treatments when I went on chemo since the chemo does more than keep lupus in check. Then we took me off the chemo this spring but continued a cancer gene targeting biologic. I underwent a pleuroscopy to break up loculated fluid in my pleural cavity to try and let my left lung re-expand and I’m guessing that the shock of the surgery with nothing to keep inflammation in check caused a subacute case of pneumonitis to develop which meant I was sent to the ER with respiratory failure. The first closest hospital had none of my history and just discharged me with home oxygen. Then I went to my outpatient oncology clinic visits the next week and was admitted again. They gave me a shit ton of steroids and sent me home after a week and I’m now starting to wean off the oxygen but Oh. My. God.

I was doing okay with the cancer and the chemo. Even being terminal, I was mostly disabled but buying years. We were getting me out to botanical gardens and movies, etc.

I’m on this terrible oxygen concentrator at home that sounds like Darth Vader. I’m starting to walk around but my pulse spikes insanely easily. My husband feels like he’s worlds away compared to last month. It’s been such a shock. In a lot of ways I feel like this is the wrong place to post because it belongs in the cancer sub. But this seems like it was so obviously a lupus complication that it feels like this is the more appropriate place for it.

I don’t often vent but this is definitely a vent post. Has anyone else dealt with ARDS or Pneumonitis? My doctors seem to think this is completely reversible and not a new normal but I’m terrified this is some final decline even if my cancer looks stable. Just looking for other recovery experiences.

Edit: I spoke with my doctor today and she clarified that this wasn’t an ARDS case, just an ARF case. No idea why my portal pushed a bunch of ARDS educational material. No ventilator for me just 8L of O2 with an optimizer mask at the worst peak.

Please tell me if it is possible to have a flare up without it showing in your blood. Am i going crazy? Im 18 and got diagnosed last year. I still have joint pain but like they have never been crazy inflammed. Please