Is this a mild malar rash?

[Chaolioe]

Everyone was just nasty in American forums so I'm asking here. Not asking because I "decided" I have SLE. I just recently got a doc to listen to my symptoms and is sending me to a rheum (I am ANA pos) and I know I could have any number of things.

Just wanted to know if this looked like malar rash. I know the color difference isn't stark but please don't tell me it's "normal human skin" because my face hasn't always had this to my knowledge. Skin is drier, tighter, has new milia and petechia. The edges of this redness are kind of diffuse (it's not solid redness like a sunburn). I can't tell if it's warm to the touch because I have Reynaud's and everything is warmer than my hands. It definitely gets brighter when I feel worse.

A couple pics to demonstrate it on different days. The 2 in the dark blue shirt I have a red splotch specifically from a pimple beneath my nose, that is not part of the redness I'm looking at.

Thank you so much.

[Cowsaresweet]

The key difference with malar rash and a gneral face rash is that the redness will not be on the sides of your nose. Hope that helps

[Chaolioe in reply to Cowsaresweet]

Thank you! I do believe it hits the sides of my nose, though it's hard for me to tell as my nose is always kinda darker/brighter than the rest of my face.

[KayHimm]

I can’t see it very well. But a doctor would look for specific features if you could get evaluated. I also live in the US. If you can go to a dermatologist, that would be very helpful.

How long does the rash last? Does it get worse after sun exposure?

What are your other symptoms?

[Chaolioe in reply to KayHimm]

Thank you so much!

I can call my pcp and see if she'll give me a dermatologist referral! I have quite a few moles I should have looked at anyhow, too. As well as weird "mottling" on my arms.The redness is newer to me, so I'll try to pay better attention to it coming and going. It's gotten lighter/darker but hasn't fully disappeared. I've been noticing it for just over a week.

I /believe/ it gets worse after the sun, but I'm SUPER heat sensitive and I live on a pond and have a skin allergy to biting bugs that comes and goes. Meaning I usually can't maintain being outside more than 30 minutes when it's warm and sunny, and when I am I have a netted safari style hat and long sleeves/pants. If I'm outside its usually to tend the yard, so even my hands tend to be covered. I get pretty sick if I go outside warmer than 75. I think this is all heat, not sun though. Sunlight burns my skin in an unpleasant way when it touches me, but I don't know what else is sun vs heat. What I believe is heat causes the following rapidly: headache, fatigue, irritability, nausea. When I was younger and didn't know my limits, I tended to dehydrate quickly, pass out and\or vomit and need IV.

All of my skin to my knowledge gets brighter/redder from the above, I believe.

As for other symptoms, your average collection of everything. I don't necessarily believe it's SLE. I'll try to go system by system so I don't leave anything out. Most come and go:

Neuro-

Migraines

Brain fog

Fatigue

Memory loss

Muscle spasms esp in the sole of my L foot

Tingly/pins and needles across my trapezius that comes and goes, may be related to a disc injury though

Worsening mental illnesses

Notably but not extremely poor balance.

Syncope previously blamed on low blood sugar with no testin

Loosing fine motor control a little, may be due to meds

A sensation of having/getting splinters in my fingers when they brush against things or are touched

Cardiac-

Reynaud's

High Cholesterol (little to no dietary cholesterol (even on a vegan diet) likely due to NAFL?)

Lymphocytes and platelets run high end of reference or higher (atypical for SLE I know, I believe platelets are due to oral contraceptive- which I'm getting off when I can as I think it does me more harm than good)

Pulmonary-

When I started getting more symptoms I developed a chronic cough. It's been labeled asthma. When I breathe deeply my R lung feels like it's being gripped and won't inflate as far. Often sneezing makes me feel like I've been punched or stabbed in the chest. Laughing causes coughing fits and, rarely, pain. Albuterol helps me gain control of coughing fits more easily, at very least. I'm short of breath often- even eating and fullness can cause it.

Gastric (including kidney)-

GERD

Chronic Gastritis

Stool is rarely normal, typically diarrhea.

Nausea

No appetite/painful fullness

NAFL

History of sterile kidney infections +/- stones

Cloudy urine

"Pinchy kidneys"

Frequent urination/incomplete emptying

Musculoskeletal-

Migrating arthralgia, with a few joints being favorites (L knee, R wrist)

Maybe the spasms go here?

Lately I've been developing weakness that ebbs and flows in the top of my thighs

Standing up from sitting or kneeling usually requires something to stabilize myself on

Other:

Low body temp that apparently drops further when I feel unwell

Skin allergies/dermatitis that come and go

Heat intolerance/poor ability to thermoregulate

What appear to the EMT I live with to be hypoglycemic episodes, getting a glucometer to track

Positive ANA 1:160, speckled

Sometimes pos sometimes neg Hashimotos test

Family hx of auto immunes: colitis, vitiligo, Hashimotos (also "comes and goes" in this individual), primary biliary Cholangitis (NORD rare, and in a male family member which is even less likely)

Digging pain in my L shoulder towards the front where to collar bone meets it

For a number of years I've used medical mj to manage symptoms, but after inflammatory tests were done I got curious. MJ appears to significantly lower CRP when used in the last 30 days and mine was /just/ within range in a daily user (I'd even used before the test). It hasnt been as well documented in other inflammatory markers.

Knowing mj is both anti-inflammatory and immune suppressing I have decided to come off during the diagnostic process. I may explain and ask for some tests to be repeated once I see the rheum which will be quite a few months per my gp. First day off I had a lowgrade fever and the redness brightened but it'll take 2 weeks to stop having "withdrawal" if I am. I don't have more typical mj withdrawal symptoms right now though. We'll see what symptoms are more prevalent then. The weirdest thing is my cough is worse now

Sorry that was a lot but thank you for taking the time. I hope I didn't miss anything.

I've had some of these things since I was pretty young- I'd always been told they were normal and "wait til you're my age and then see how much pain you're in". Even doctors told me my grey fingers as I called them (Reynaud's) were normal, kidney stones and chronic vomiting by 24 were normal. Heck I had a doctor tell me I was vomiting daily and couldn't hold down food because I ate too much... (When you haven't been able to eat in a few days it's really hard not to assault a doctor for saying that...)It wasn't until meeting the person I currently live with (emt training, neonatal transplant patient with tons of hospital experience) that I learned a lot of this wasn't normal.

Again thanks for taking the time to listen

[KayHimm in reply to Chaolioe]

You have a lot that needs to be sorted out - all hard to diagnose. I wonder if you have autonomic dysfunction. That can be related to autoimmune disease and produce a lot of different symptoms. I would ask to see a neurologist, preferably one who knows dysautonomia.

Your heat and sun intolerance sounds unclear. I wonder if you have both.

I am surprised you have not been sent to a rheumatologist earlier with your positive ANA and so many symptoms.

It would be good if you had a photo of that unusual sunburn.

Good luck with this.

K

[Chaolioe in reply to KayHimm]

I'll see if maybe one day I can get a photo with my real camera. My phone is inexpensive, and the camera reflects that.

I've heard of dysatonomia before and it sounded close. I know my partner thought POTS briefly, but I feel I'd have wayyy more syncope events.

I'll definitely ask about a neuro too- probably a good check in either way. I'm on state insurance so I need referrals for everything, I believe. Finding one who specifically knows dysautonomia may be a big challenge though. We have to travel out of state for the liver transplant team, and 3 hours away for a lot of other specialists (I live in rural Maine. Our zip code has 2 towns and less than 3k people). Last time I went to a neuro I was maybe 8? My migraines started around 6 or so and for a few years they tried to figure that out since migraines at that age is notably abnormal.

I've apparently had a negative ANA earlier in my life, I'm suspicious now though that it may have been a 1:80 and it just got called "negative" because 20% of people at that titer are healthy and previous doctors were not what I expect or want in a doctor. The doctor who sent me to a rheum is the second doctor I've tried since moving, and I ended up just requesting my partner/the tx patient's pcp. She listens because she knows his case and trusts /him/. As I said, most doctors before just ignored my symptoms, told me they were normal, etc. It took hair follicles abscessing for my own mother to start believing me. The doctor I had before this one up in Maine passed me off with "Everyone runs at different temps" when I tried to bring up temp reg and what was diagnosed as Reynaud's. She was super obsessed with me doing an IUD consult though and kept ONLY talking about that and disregarding my concerns.

I was also raised pretty meek- my mom is a steam roller. So I learned how to take a back seat... which made me bad at self advocacy. Luckily I trusted my new pcp before having her as a pcp so I opened with the fact that my experiences have been less than pleasant with doctors in my native state of Connecticut. [TW, Sexual Assault] Heck, I even had a doctor in CT do a pelvic exam with no glove on. I reported him, but still. Connecticut doctors are monsters who forgot the hippocratic oath and are high on hubris. Maine has been much more compassionate care, which is likely why it took this long to get a referral. But I'm super greatful. My partner has witnessed and validated me, but having a medical professional finally validate me by even running an ANA is huge. I've spent so many nights crying before wondering if I was really just crazy, or unable to handle the normal aches and pains of life, or a hypochondriac. Knowing that there's a 95% -odd chance something is wrong is a bit of a relief.

That all being said, the pcp still said that the rheum may take many months since my symptoms aren't too much or too bad and they prioritize. I had to start a pain journal though because everything was so normalized to me, there is a lot I didn't remember to mention. Even the sheet of symptoms I wrote down and brought, we didn't get through. I'm hoping when she gets more of my records she'll maybe call the rheum and push for a little sooner.

The only person to be interested before was the infectious disease specialist who spoke to me after my first sterile kidney infection.

[KayHimm]

So hard. It sounds like you have had lots of symptoms but nothing the doctors can get ahold of. Many of us have had that. There are great doctors at Yale if you can manage to get there.

[Chaolioe in reply to KayHimm]

There are some good ones, but they're moving away from med into social arts. They also don't believe in Chronic Lyme there which really worries me in terms of their competency (I worked with Lyme for years in a diagnostic lab and chronic lyme is certainly real). It may be because CT is touchy about Lyme in general. I'm weirdly obsessed with tick bornes though (I have none but working with them for years breeds an interest).

My partner goes to MGH and they're honestly awful in terms of patient treatment- they've treated him for his whole life and they act like they don't know his medical history. I worry other similar hospitals might be the same. The infectious disease guy who took interest was from UConn though. Maybe UConn health center would be a good choice.

If it doesn't work up here, I may try an go for Yale or UCOnn. My big brother does yale's ospital network security so I imagine he might be able to throw me some names! Both his kids were born there too.

Thanks for being willing to listen- i know auto immunes can be very hard to nail down. Finding support online and in my also compromised partner has been HUGE. It'll make the long process much easier

[KayHimm in reply to Chaolioe]

There is some here who has a team at Yale and I know she would make recommendations.

[Chaolioe in reply to KayHimm]

That would be awesome! I'm getting better at giving new doctors the benefit of the doubt. It's just very challenging after my experiences.

Your input has been wonderful, thank you again

[KayHimm in reply to Chaolioe]

You’re welcome!

[Chaolioe]

KayHimm Cowsaresweet Wanted to briefly update you both as you'd been kind enough to reply:

I spent over an hour in my field farming the other day without my hat. The redness significantly worsened- by the time I gave myself a break, it almost looked like I had a pale red masquerade mask painted on. It seemed to spare my nostrils/tip of the nose and mouth area, until I flushed from exhaustion, which is a totally different thing. It was darker than my flush, but nothing my camera can pick up well. I grabbed what I feel are awesome photos to take to the Rheum. I took some about 30 minutes apart where a difference in color saturation is notable, as well as the later photo my skin looks more pocked. A rash also appeared on my ankle, possibly on my hands(my more arthritic one was redder so it may have been from the tiller giving my hands a good shaking, but there were splotches that don't correspond to bug bites I have left, particularly my pinky fingers between my closest knuckle and the next). I documented photos of it all.

However, and I don't know if it matters, it calmed down by 24 hours later, and is now about at the level it appears in the above photos.

Whether malar rash or not, there's something happening on my face and I appreciate that y'all have me feedback of what to look for.

Thank you so much for your support and listening ears.

[KayHimm in reply to Chaolioe]

That is good you took the photos. Glad we were able to help. Distinguishing between rosacea and a lupus rash can be difficult. I hope you took a photo of the rash on your ankle. Any rash on sun exposed skin can be significant.

Check back in and best of luck.

Xk

[Chaolioe in reply to KayHimm]

I did capture some shots of my leg. And I marked what wasn't bug bites with dots so that in the future when I show the doc, I can tell which redness did or didn't make sense at the time.And the fact that you say exposed skin really peaks my intrigue- I had long sleeves and camp pants. The only skin exposed that day was hands, ankles, and face- all places that had marks when the rest of my body didn't. I'll remember to express that was the case when showing the photos to the doctor.

[KayHimm in reply to Chaolioe]

👍🏻