Mostly seeking knowledge regarding the lip specific reactions but I have included photos of the face flushing as it does seem they are likely connected, however it is possible they are not.
I am a 31yo female.
Duration:
Began three years ago.
Duration of reaction varies greatly between 30-60 minutes to two weeks ish. Can come on very quickly (minutes) or develop over days.
Included are photos of my lips before this began and the various ways it presents now. The grid is in chronological order, it is not every reaction I’ve ever had but a selection to show variation.
It does seem to be getting more frequent but not necessarily more intense. The suuuper bad first three peeling reactions were the worst and the longest it’s ever been that deeply swollen or raw and at the end of that like 2-3 month period I got a fungal infection just on my lips because of how vulnerable the skin was.
There have been periods of days/weeks where I think surely this over and they’re healing but then it happens again and it’s clear that it’s not. I haven’t gone any sort of extended period without issues for at least a year. Earlier on I could go 2-4 weeks without a moderate to major reaction but now it is a usually daily or multiple daily occurrence.
Location:
Does not really extend past border of lips. Does not extend into mouth (past “wet line”).
Symptoms:
Not itchy. Is tingly, hot, dry, not dry, peeling, not peeling, textured, blistered/welts, deep sometimes firm swelling, general swelling, surface level swelling, quick onset, and/or slow build. When there is no skin on my lips it obviously stings/feels very raw and can be painful rather than just uncomfortable/annoying. The blotchy rash alone isn’t painful just uncomfortable and frustrating. As you can imagine it generally feels 10x worse than it looks.
Began as two distinctly different reactions, one delayed and longer, and one quick and acute/shorter in duration. In past year or so they have sort of merged to become more one thing or are more likely to occur together. The acute blushing/surface level swelling thing doesn’t always become intense peeling and/or deeper swelling but it can. The most common now is the weird blotchy reactions and just general dryness and sensitivity.
Can (especially recently) present with quite mild to intense deep flushing of cheeks and/or redness of the nose. Less often my forehead may have a random red flushed patch too. Those things have been increasingly happening with and without lip involvement. The flushing began before the lips by 2 months ish. The flushing comes and goes within 1-6ish hrs and is not constant. Nothing seems to stop/treat the flushing effectively, cold compress, shower, whatever. Only time helps for certain. Antihistamines sometimes maybe help a tiny bit but not in any particularly measurable way and they obviously aren’t stopping it from occurring at all.
Triggers (best guess):
Argan oil direct contact seems to have been what began the extended 2 week type deep swelling and peeling reactions that came on 1-2 days post exposure and then maybe got faster. Eliminated that after 3rd reaction. This was not the first time ever that I came into contact with argan oil but it was the first 100% confirmed intentional use in a number of years. I did not intentionally put it on my lips but I transferred it there via my hands. Previously I had had no issue with it. My scalp, ears, neck, hands that also came into contact with it at the same time showed no irritation or rash, just my lips.
First really red, potentially more immediate and short duration (less than an hr) red blotchy reaction (1.jpeg) was source unclear, hypothesised cat hair, or pollen, or truly anything else. Resolved with shower.
Fragrance (general, many but not all) examples such as generic washing powder, scented dish soap, scent diffusers, perfume, perfumed hair products. Does not seem to have to be super direct exposure, often on other people’s clothing/hair rather than my own directly can set it off.
Other times there is no obvious exposure, the rash (blotchy) usually now triggered by fragranced products begins in my room which is a “safe” space for me, yet the rash comes on even after an extended period of time in there only. Hypothetically could be something on my phone or clothing I’ve transferred to my hands then face but who knows.
I have very good hand hygiene generally but especially because of this and avoid touching my lips unless I know my hands are clean. I am obviously not perfect, but I have also had reactions where there has been no direct physical contact recently. I have had the reaction occur whilst wearing an n95 mask whilst standing over a steamy sink.
Foods do not seem to themselves be a trigger in any way but if I’m already having a reaction or my lips are extremely dry it can aggravate them further. It is not oral allergy syndrome triggered by raw fruits or vegetables but is fine when they’re cooked as I can eat both without reaction. I mention oral allergy syndrome as it’s the only photo I’ve seen before that looked vaguely like mine.
It is not related to excessive lip licking or rubbing, although those things will make it worse once it’s begun since the skin is fragile.
It is seemingly unrelated to heat, cold, sweat (although sweat and heat can irritate them if they are very raw), emotion, nor limited to any one particular activity, location, or time of year/day.
Treatments:
Suspected trigger identification attempts and then avoidance, not able to identity singular consistent trigger, seems to be multiple as discussed above. Have done my best to put myself in a bubble and that has perhaps lessened reactions but has not stopped them entirely. It is also not sustainable.
Switched to Vaseline only during earlier 2 week intense peeling and swelling type episodes. Prior to that used Dermal Therapy Original lip balm tube for many years without issue, might be fine outside of intense peeling episodes but haven’t tried it again as it contains some commonly irritating ingredients for other people, might try going back to that this week bc why not at this point. Currently using Apquaphor Healing Ointment (not their lip balm specific version just the original general one).
As mentioned early on with the back to back peeling and lips becoming extremely raw I developed a fungal infection which was treated with combo antifungal and steroid for about a month. Weened of steroid and got relatively mild dermatitis by my eyes that resolved with time.
Currently taking two above standard doses of antihistamines daily, take extra immoderately if possible when I have an acute reaction. When possible immediately wash face and/or shower and remove clothing if that seems to be related. Both of those can help resolve the acute blotchy reaction faster or lessen it but at this point do not actually stop it. They have no effect on the longer duration slower onset peeling textured type reaction. The only thing that potentially helps that is steroids and again it doesn’t actually stop it, it just maybe makes it slightly more bearable (but has consequences and risks when used on the face).
Relevant background:
History of mild-moderate sinus/migraine reactions to certain strong perfumes but nothing like this.
History of dyshidrotic eczema severe 15 years ago (likely triggered by long removed single food allergy), very mild and infrequent contact dermatitis and/or dyshidrotic eczema triggered by scented hand soaps/cleaning products. Severe era didn’t respond to steroids, very mild presentation and contact dermatitis helped by single/short use of mild steroid cream. Cystic bad acne in 2020/2021 that resolved with oral Isotretinoin, still take 20mg daily.
Sensitive skin but as far as I know it’s in a more general population with sensitive skin kinda vibe rather than whatever is happening here. Rest of face is doing fine with a variety of different fragrance free boring moisturisers and cleansers.
Generally sick chronically ill/disabled person. Don’t particularly want to discuss that here but will consider if you have an idea in mind. Nothing I am already diagnosed with could or would typically cause this.
If you really think it’s allergy/immune related. My worsening mostly seasonal asthma/vcd could be relevant but it also could be completely unrelated.
An immunologist suggested I might have rosacea but I am unaware of any presentation that ever looked like/ included this. If you have please let me know. Not wildly out of the question due to acne history, vague seb derm ish vibes I’ve had over the years/ yeast related face skin issues that mostly resolved with a tube of daktagold in past few years. The dermatologist who prescribes my Isotretinoin saw this earlier on and didn’t have any particular thoughts/didn’t care and it was more in the argan oil contact dermatitis type era before the more recent presentations/increasing severity and frequency.
Recently had chalazion and eyelid swelling on one eye, treated with clorsig antibiotic drops, hot compress and calming camomile tea soaking. Swapped to chlorsig ointment as directed by optometrist but it triggered mild peri ocular dermatitis and very severe bone dry red gritty eyes in the 24-72 hrs following that and that was not helped by frequent use of quality gel drops or anything else over the counter. Ended up on 3 weeks of steroid eyedrops which I weened off without tissue. I mention this as I saw it was potentially co morbid with rosacea and can be related to demodex mites.
The immunologist also suggested neurogenic rosacea but again whilst this might explain the flushing I don’t know if it really explains the lips. I also don’t feel like the typical triggers are issues for me at all.
I had Covid 6ish months before this repeated lip reaction and facial flushing began, it was the only time I’ve had Covid. It is not the only time I have had a pretty intense viral illness, I was very frequently sick as a teenager young adult but am no longer having frequent infections for a number of reasons. I’ve only been sick twice in the last 6 years compared to once every 6 months for the majority of my childhood/teen years.
Repeated positive ANA but negative for all follow up autoimmune testing. Thyroid ranges normal. Hormone ranges historically normal other than my most recent test which was slightly off, will see if that continues or was nothing. Chronically low iron treated by yearly/bi yearly iron infusions. Chronically low vitamin D levels treated with vitamin D injections (I can’t take the oral supplements). Occasionally low vitamin C but testing for that there is room for technician error. My diet is not perfect but I should have enough in there 95% of the time. All other routine blood testing normal.
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