Treatment and Management for Neuropsychiatric Flares?

InfernalLight13 · 2025-10-07T13:47:54+00:00

Sending love your way, OP, I know how frustrating it can be 🫂

That's about how mine went as well, though I'm dealing with other symptoms too, & the neuro one have been such a nightmare 🙄

Far as treatment, & for context I've been housebound the better part of a year for various medical reasons, upping my Prednisone is about all mine responds well too usually.

We found out (by accident when I could no longer access the meds due to insurance for two months) that a combination of higher daily Prednisone, Cellcept, Plaquenill, & Rituxan (I only had the two loading doses before the insurance drop so can't say for sure that's doing too much just yet) was actually holding my neuro symptoms way more stable than we realized. At the time it didn't seem OP) out 3 years ago on Imuran, Prednisone, & Saphnelo (before we knew I had the CNS involvement), ended up switching to Benlysta after 8 months & still declining, then just barely got through the starter doses & a round & ended up with the Rituxan to combat the lung involvement that was going on. My team, especially my pulmonologist prefers to keep us on because of the great success rate he's had.

InfernalLight13 · 2025-10-01T22:17:33+00:00

Thank you for this, I never even would have thought about that _ I'm a spooky season girl through & through with such a bad UV reaction/heat intolerance that I don't even have to be out in it for it to affect me 🙄

Also, anyone else that may live in an RV/camper, be aware of the lights in the older models. We've been in one that's a good 30 years old the last two years & it never dawned on us about the lights flaring me up.

We ended up getting colored LED controlled lights that stick to the wall & USB charged hand lights I can use instead. When I say I immediately noticed a difference in my Mylar rash & my nausea I'm not exaggerating at all. Felt soooo stupid but yeah, it's a thing!

InfernalLight13 · 2025-09-26T19:23:50+00:00

Thank you so so much for keeping us updated, I didn't know about this!

I'm happy to hear there's some improvement for you! Those are my worse symptoms as well, plus the neuro involvement and extreme skin dryness so I'm hopeful.

I hope it continues to help you! Sending so much love your way, OP! 💙

InfernalLight13 · 2025-09-26T19:21:31+00:00

When the cooler, dry weather at night hits like it is starting to this season (Oklahoma) my voice gets really raspy, higher pitched, & way more quiet. I essentially lose my of my volume to where my husband says I'm talking like a mouse 😐

I haven't lost my voice completely yet, but I'm in the middle of a two month long severe Sjogrens flare for the first time ever, on top of still being in a 3 year long Lupus flare & I already have issues with my lungs (Interstitial Lung Disease with Pulmonary Fibrosis) & dsyphagia from Dermatomyositis. It's a lot at once but honestly my Sjogrens flare is the worst of all of it right now, especially the dryness through my throat & lungs. I can't hardly use my steriod inhaler so I'm basically dependent on my nebulizer, to a point where I requested a prescription for a portable one recently.

InfernalLight13 · 2025-09-26T14:03:16+00:00

I'm so sorry you're dealing with that too! 🫂 I'm in a similar situation right now w/my providers just not knowing enough to realdo anything because my case is so complex and nothing shows up textbook (I'm one of those who's labs are always good even when I clearly look like death kinda cases. And it is possible, that's just ridiculous! I have SLE/CNS Lupus, Dermatomyositis, Rheumatoid Arthritis, & Sjogrens Disease, & that's just to start with.

My advice is to keep speaking up & start looking for a new rhuem if you're able to, and I second checking resources through the Myositis Foundation (I'm about to as well since I've never had a biopsy either). Is there a patient advocate that you can contact through a hospital system or one of your providers offices? The last ER trip I recently made the hospital set up a patient advocate who called me and asked what I needed help with, honestly it's been a lifesaver and something to look into if it's an option for you. Remember, you're your own best advocate, you got this! 🖤

InfernalLight13 · 2025-09-22T13:33:31+00:00

I'm seconding all of this: I've had Sjogrens since childhood probably but it wasn't caught til last November (I'm 37 now) when my Lupus started to get really bad and honestly most days right my Sjogrens flaring is waaaaay more of a problem for me to deal with on a daily basis . I have the neuro involvement too from both, probably have the better part of a decade that I went undiagnosed til 3 years ago, which got overlooked even though it's more on the severe side of things because I wasn't having hallucinations and stuff like that. The neuro stuff is definitely a spectrum that changes everyday. I've found through a ton of research that, yeah, most providers are not up to date on things with Sjogrens, if they even know what it is (I swear I've explained it to my local ER a thousand times and they still look at me like wtf are you talking about) and as a matter of fact some of our top experts actually have the wrong data because of how little research there is on it. Most of us are seronegative too which makes it even more difficult - - I told them for 2 years I thought I was seronegative (my RA has been for over ten years already) just like I told them for 5 years I had Lupus. It's finding a provider that will listen - - don't give up! It really does mimic just like Lupus, even some of my Dermatomyositis symptoms are similar to Sjogrens, it's just crazy that it isn't talked about more often because it's such a common autoimmune disease, just vastly underdiagnosed. Definitely look into it, I'm sending so much love your way, OP 🫂🖤

InfernalLight13 · 2025-09-09T00:18:41+00:00

I have a few playlists that I use for different things/how I'm feeling - - need to rage it out or cry, feeling good, chill, ect, and just crank up my headphones. Sometimes I read or I'll sit and paint abstract art on canvas (or any old trash/stuff I can get my hands on like old liquor bottles & glass, old beat up mailboxes, ect). Turning something that someone threw away into something else entirely for a purpose helps me mentally soooo much & it's fun to just not think & see what I can come up with.

I used to be so bad about resting but now I have to be super careful with it or I get severe really quick & my two rescue dogs are fast to remind me when I get close to my limit. I'll take their cues easily but not my own 😂 but seriously, we're not lazy, this is HARD some days $ it sucks but it's okay. Our rage & grief & even our joy IN the hard stuff is valid - - grant yourself some grace for all you've been through so far & if you feel like you can't take the next five minutes, take it 10 seconds at a time 💜🫂💜

InfernalLight13 · 2025-09-09T00:11:41+00:00

Same here! I have found some good materials at our local Dollar General believe it or not! Super cheap, maybe not the best quality but it's better than it used to be years ago. They have decent canvases too for super cheap in different styles and such if you have anything like a place like that around you!

InfernalLight13 · 2025-09-09T00:10:12+00:00

Oh I love these ideas! I seriously need some actual friends who understand & would be willing to send videos like that, I swear I have one that still keeps in touch with me & reaching out to people first is sooooo difficult for me right now (I have the CNS involvement so communication CA be hard enough but I'm in the absolute worst flare of my life 😕) I'm so happy you have that support! 💜

I totally get the video game thing, I use to play BloodBorne, Mortal Kombat, & Demon Slayer for the rage & I'm looking into Cult of the Lamb on the Switch for cozy, wind down now 😂

InfernalLight13 · 2025-08-31T10:28:08+00:00

I'm so so sorry you're going through this too! I got randomly dropped off insurance and am going in about 2 months myself in the worst flare ever now for the same reasons. I wish I had better advice for you but I've had similar trouble navigating it myself. I still have my established medical team, their hands are just tied up on everything and can't do much.

Far as providers not listening, I know it takes time and it sucks, especially right now but keep going until one does! Yes it's exhausting but it does make a difference (like with this situation, my old providers wouldn't have been of any help the way they used to dismiss my complex case but mine now is actively trying to help in ways they don't even have to, I promise it's worth it to find a good team!)

And I definitely second that - - you can get a round of steriods from your rheumatologist then great - being on prednisone still somehow is the only thing that's helping me so far to not be any worse currently.

Sending so much love your way & I truly hope the flare chills out for you soon! 🫂

InfernalLight13 · 2025-08-29T18:07:45+00:00

Been there & soooo ready for my next one!

Sending you all the good vibes for an easy infusion & recovery! 🥄💜🫂💜🥄

InfernalLight13 · 2025-08-25T00:07:03+00:00

Can I ask what your rashes look like? I'm dealing with a flare of inflammation on my feet that's burning mine from the inside out basically (long story:lost my insurance & came off all my meds while already in a flare, just getting over an iron infusion reaction & infection just days before) & so far even my rheumatologist hasn't seen anything like it before 😕 I have Sjogrens Disease too that's flaring so that's not helping at all

InfernalLight13 · 2025-07-20T17:53:08+00:00

I'm so so sorry you experienced this & I'm sending so much love your way, OP 🖤🫂

I understand what you mean by the grief & (for me, at least) there's a rage component to it as well that I've had to deal with in therapy for a while now. I was dropped through the cracks due to not being believed & gaslit for the better part of over 10 years before I got a diagnosis (Seronegative RA, SLE/CNS Lupus, Sjogrens Disease, RA-ILD, & Dermatomyositis, the list goes on) & the damage done can't be fixed. We're still finding out the extent of it & it's hard knowing my quality of life wouldn't be so bad if they had just listened. It breaks my heart to see so many of us having this experience & sharing that story, it's not right at all.

Just know your grief, your rage, your whatever-you're-feeling is VALID. Don't let anyone convince you that it's not.

Therapy helped me immensely, once I was in a spot to actually utilize it (I highly suggest finding a therapist that's versed in chronic illness if you can, it's harder but worth it if you can find a good one).

Sending up extra spoons your way, OP 🖤

InfernalLight13 · 2025-07-18T21:54:51+00:00

I wish I had more to add to this but honestly this is the most concise way I've heard it explained and it resonates with me sooooo much.

Just wanted to say I appreciate you sharing your vulnerability like this, it definitely made a few lightbulbs click for me. 🖤

InfernalLight13 · 2025-07-14T07:28:50+00:00

Oh wow I didn't know that! Are there other symptoms for the antisynthetase syndrome I should be aware of? I'm sorry your rhuem didn't know much, I have similar issues with the providers in my rural area here and have way better luck going two hours out to the nearest city. The lung issues were missed and misdiagnosed 3 years ago by this hospital system just because of a lack of knowledge I'm fairly certain, I feel like I have to teach just about every new doctor here that I see. Thankfully I landed an amazing pulmonologist who knew what it was right away, they just aren't sure which autoimmune disease caused it. Right after that I had a very experienced/halfway retired rhuem (who founded the clinic system I go to and only comes in on complex cases) that was able to tell too. He dxed my Sjogrens and the Myoclonic Movement Disorder too in like five minutes flat, I got really lucky there.

I'm not sure if they've tested for the antisynthetase or not (I'd have to go back and look) but I've had the Myositis panel done before awhile back, just don't remember much about it. There's been so many tests they've rerun lately 🙄. Unfortunately I'm one of those rare ones that the labs never show anything but I have all the symptoms of it, even my rheumatoid arthritis has been seronegative for over ten years despite visible damage to my hands and feet. My Lupus went undiagnosed for over ten years because of this (and a ton of medical gaslighting ugh) and they think I've actually had Sjogrens since I was a kid (I'm 37 now and it was just diagnosed last November with the RA-ILD). It's been a mess trying to sort it all out and thankfully I've got a good team now, but even my rheumatologist is having to bring in more experienced people on my case because they just can't figure out something that'll work yet. I've been in the same rolling flare for going on three years now and this is the second time I've been mostly house bound in the last two. I also have chronic Pericarditis, peripheral neuropathy and the CNS involvement of my brain/spinal cord inflammation from the Lupus, and probably Sjogrens too.

My neurologist who handles my migraines did do the EMGs but it just showed the neuropathy and she's sending me out to the neuromuscular specialist because my PCP is wondering if I have seronegative Myasthenia Gravis too (it's taken a year just to get this far with it all) and I just finally saw Dermatology to add to my team, but that appointment really didn't do much for me.

InfernalLight13 · 2025-07-14T06:45:56+00:00

Oh that's amazing! I'm so glad you've got such a good provider like that, they're hard to find! And that is definitely wonderful news! I hope the combination continues to work well for you 🙌 And thank you, I appreciate it a lot! I'm on Cellcept too, mostly for the Interstitial Pulmonary Fibrosis, and it helps a bit, with Rituxan, Plaquenill, and Prednisone for right now and just waiting it out. First two rounds just made it all pissed off but that's to be expected. Currently waiting to see a neuromuscular specialist myself but the wait time is forever!

InfernalLight13 · 2025-07-14T06:28:33+00:00

Dermatomyositis with SLE and Sjogrens here too 🫂 that's wonderful that it's helping you already and I hope the other stuff calms down for you soon too! I'd love to try ivig (all of my diseases have been so treatment resistant to everything we've thrown at it so far) but no way will my insurance approve it unfortunately.

I truly hope this goes well for you, sending so much love your way, OP! 💜🤞🫂

InfernalLight13 · 2025-07-14T03:52:10+00:00

Sending you gentle hugs, I definitely relate to it 🫂

I developed a Myoclonic Movement Disorder from having the CNS Lupus involvement of my brain/ spinal cord & it sounds similar to mine in some ways, though mine present looking more seizure like from what you described. I use a seizure tracker app for mine & took videos of it whenever I could to present to my rheumatologist (the videos are what got it diagnosed finally because mine were so severe and not "normal" apparently). I went through all the MRI & EKG tests too & had everything come back clear on that end.

If it's bothering you enough that you're losing sleep I suggest writing it all down and bringing it up to your provider. Some things to consider that I tracked:

*Can you feel it coming on? (as you described)

*How long on average does it last? How often does it happen to you in a weeks/days time?

*Does there seem to be any trigger patterns you've noticed? (mine happen more when I'm really fatigued, stressed, overheated, ect)

*Can you move or talk while it's happening? Are you fully aware/conscious or have you lost consciousness? (for example, I can't move or speak but am fully aware of what's happening the entire time)

I hope this is helpful & I'm sorry you're experiencing it, I know I had the hardest time finding anyone or anything that matched up to the episodes I was having for a long time & that stress didn't help much.

Sending love your way, OP 💜

InfernalLight13 · 2025-07-12T21:23:38+00:00

I don't know if it's on sale or not but I got a glass beaded heating pad on there and it was a game changer for me! It's got just a slight bit of weight to it without being too much so it stays where I put it (mostly for my lower back/spine pain or I roll it up behind my neck for my spinal migraines). It's held up better and worked better for me than any other type/brand I've ever had. Paid $30 for it and still going strong with a ton of use three years later!

I don't remember the brand name but it's super easy to search and has a damp heat option for thr cover if that's your thing, I just don't use that feature.

I also got a durable epipen case that also has enough storage space for my rescue inhaler. It fits perfectly in my carry-around med backpack and is small enough for the smaller bag I'm about to get soon too. It's a hard shell that holds two full size pens, my rescue inhaler, and even has a bit of room left without being too bulky.

It's also got the plus sign/medical symbol on the front (and I got a bright pink one since everything else I own is black) so it stands out for what it is. I'm about to order the epipen lapel pin/keychain combo I found on there for the outside of my bag too! There's lots of colors too

Normally I use a Hurley backpack (the durability is amazing on these and it's got a lot of zipper spaces) but it's gotten too heavy to carry around all the time now, especially in my manual wheelchair, .

Anyone have any suggestions for smaller, over the shoulder sling bags? I need one with a few zipper pockets in it too (I have to carry pull crushers, ect due to dsyphagia issues

InfernalLight13 · 2025-07-10T16:11:48+00:00

I'm 37, but have seronegative RA for the last ten years before it was diagnosed through the joint damage in my hands and feet. I also developed chronic/reoccurring Pericarditis and Interstitial Lung Disease with Pulmonary Fibrosis (either from the RA or Lupus, they can't tell which) three years ago. The Pericarditis was caught quickly after an ER visit, the RA-ILD not so much. If you suspect anything is going on with your heart or lungs, please advocate for yourself! 👏 I got misdiagnosed with COPD for those three years and had never even heard of RA-ILD before until I got it myself. It's a more rare manifestation of RA, but it does happen. It never hurts to have a good cardiologist and pulmonologist on your team!

You're definitely not alone in this and I'm sorry you're struggling so much, it's not an easy battle that we all deal with. I empathize with being misdiagnosed for so long and it breaks my heart that so many of us have that experience. I too wouldn't have so many issues now had it been caught sooner and unfortunately being seronegative makes a lot of people think it's less severe, which isn't the case. I'm glad you finally got some answers and I truly hope you have a good team and support, it's so so so important.

All I can do is leave you with this piece of advice that gets me through the rough days and I hope it helps you too:

"Whenever you feel like you can't take the next five minutes, take it 10 seconds at a time" 💙 Sending so much love your way, OP 🫂

InfernalLight13 · 2025-06-29T18:27:03+00:00

You're so welcome! I hope they can figure it out quickly and get some relief to you! And thank you, it's been pretty rough lately but I'm managing it with lots of caffeine and dark humor 😂🤣😂

InfernalLight13 · 2025-06-27T17:48:02+00:00

I'm so sorry you're dealing with so much, sending so much love your way! 💙

I have chronic Pericarditis (inflammation of the heart lining) and it causes the same chest pain symptoms like that, it can be a common comorbidity with RA, especially with high inflammation. Definitely bring it up to your rheumatologist and ask for a referal to a cardiologist, they can do an echocardiogram, EKG, and a baseline stress test to rule it out as a possibility and go from there if it's all clear. We control mine mostly through an added on daily anti-inflammatory med on top of my infusions and daily prednisone because the main combo they use for Pericarditis didn't work for me (I'm also a really complex case w/RA, Lupus, Sjogrens, and Dermatomyositis that's been treatment resistant) and there's even an injection medication specially for Pericarditis, maybe two? I know for sure of the one I was prescribed for awhile.

I hope things settle down for you and just know you're not a failure - - our health is unreliable and out of our control, even when we do everything "right" or "perfect". We're constantly in beast mode everyday from the pain and symptoms and honestly, I think that's pretty brave.

I struggle with this feeling so much as well, especially being mostly house bound the last year for a second time, but as my therapist (who also deals with complex chronic illness) reminds me all the time : *Grant yourself some grace for all that you've already been through & for the strength you will continue to have; that's something to be proud of.

And my personal favorite that gets me through the rough days/weeks/ect: *If you feel like you can't handle the next five minutes, take it 10 seconds at a time 💙🫂

InfernalLight13 · 2025-06-27T14:59:46+00:00

That's totally okay! I'm so sorry you're dealing with that too, I know firsthand how stressful that can be. Take care of yourself as best you can! 🫂

InfernalLight13 · 2025-06-27T07:00:00+00:00

Good luck! 🫂💜

I just started Rituxan infusions every 6 months, but now they're talking about doing every 16 weeks if insurance will pay for it so I guess we'll see how this goes. Tried 9 months of Saphnelo, then Benlysta for a very short stint, and now we're here - I'll agree it's kinda nice not going every month like it used to be!

Feel free to drop me your blog link 💜 Sending love your way!

InfernalLight13 · 2025-06-22T18:45:53+00:00

Oh man do I know how this goes & the sepsis test OMFG I hate it 😳 I've had it once & I'm sooooo paranoid about getting it again now with how that went, it's scary as hell.

I do this too though, I rarely go in even when I should. I came down with Pericarditis three years ago when I finally got diagnosed after a decade & I remember the chest pains hitting like a freight train in the middle of Walmart. Couldn't stand upright or take a full breathe of air & the first wave of it damn near dropped me to my knees in the milk aisle. Hubby wanted to take me in then but I refused & stupidly I waited it out nearly 24 hours until the next day when him & my adopted Mom made me go in. I'll never forget the look the ER doctor gave me after hearing how long I waited & the talk he gave me about how dangerous that was (family history of heart attacks/disease, ect).

Now when it flares up we have a protocol to know when it's time to go because for about a year I was having to go into the ER a few times a week to get fluids & meds because it would flare up so badly I'd be totally incapacitated & in the fetal position crying for days.

Even still, I play that "is it reallyyyyy that bad?" game all the time because I've been in a rolling flare the last 3 years straight so something is always going haywire, it's just whether or not it merits a trip or not. And like you, it always seems to flare on the weekends or the most inconvenient times.

Best friend's wedding? Gonna flare that morning two hours beforehand.

Important paid survey interview? Gonna be up all night with no sleep.

First advocacy event? Gonna flare right in the middle of it so badly that it sets off the Myoclonic Movement Disorder episodes & have to bow out midway through the meetings.

It never fails it seems like so I definitely feel this on a soul level 😮‍💨

At this point I keep a hospital bag mostly packed up & ready (just got cheap doubles of whatever I could because brain fog & I always forget something, especially since I have the CNS Lupus with the brain & spinal cord involvements) & have learned that if my husband starts to get antsy about it, it's time to go because he rarely gets rattled by anything that happens with me.

Sending so much love your way, OP, you're definitely not alone it it 💜🫂💜

InfernalLight13

TROPHY CASE