u/scaredscareedd

Has anyone had a patch of hair loss recur in the same exact spot? I've had one that has shed and grown back a couple times now. Each time it sheds, the patch comes back even bigger. I'm unsure if this is AA at this point.

In the middle of an inflammatory flare - I've been getting steroid shots every six weeks (two rounds so far) and I'm on doxy, LDN, min, dut, and zyrtec. I was supposed to rotate between a topical steroid (1x every two days) and opzelura (2x a day, except when applying the topical steroid). At my last appointment, my scalp apparently showed new "irritation" (not follicular inflammation -- not perifollicular redness or scaling -- but pinkness between the follicles, on my scalp itself) so I was recommended to stop the opzelura since that was suspected to be cause as it was the only notable change to my routine.

I've also been dealing with a persistent case of perioral dermatitis on my face (never had it for month than a week or two before, but going on eight months now). It can be triggered by topical steroids. Even though I'm only applying it to my scalp and go to great lengths to prevent transfer to my face (make sure to wash my hands after application and before anytime I wash my face, almost never touch my face now except for skincare, sleep with a hair bonnet and on my back in case the topical has transferred to my pillow, etc), I'm scared that I may be retriggering the PD. I don't feel like the topical steroids even help that much for my inflammation and one derm I saw (though not a scarring / hair loss expert) told me to stop because the topicals don't penetrate the skin deep enough to treat inflammation anyways.

Has anyone chosen to stop topical steroids, and what has been their experience? Did they notice more shedding or symptoms?

How long does it usually take for doxy to help calm inflammation, if it does at all? And how long are people usually on it? I've seen some people post about being on it (and/or hydroxy) for years. Is that usually because inflammation is still actively present, or is it largely preventative?

For context, I'm being put back on doxy 100mg 2x a day for the next three months. I was on doxy (same dose) for over four months last year but I was unsure if it was helping because it didn't relieve any of the constant, daily scalp burning I was experiencing. In retrospect, however, I realize I didn't have abnormal shedding while on it nor any patches of hair loss along my hairline; the shape of my hairline was relatively stable and dense. I also now realize I was actually growing and retaining hair during that time (not only losing ground, like now). I tapered off doxy by December '25 and have been in a cycle of inflammatory flares since January '26. Now, I have patches of hair loss along my hairline that have caused it to have an irregular, jagged looking shape. Since then, I've started LDN (which has eliminated the scalp sensations), topical steroids and ILK, and opzelura (as well as daily zyrtec and anti-inflammatory diet), but the flares persist nonetheless. All to say, I'm now wondering if the doxy was what helped me last year and that being off it is why this year has been relatively worst, or if my disease is simply progressing.

Has anyone used Opzelura for PD before, and if so, did it help? I've had PD / problems with the skin around my mouth for about five months now (I've never had serious, long-term skin conditions before this). The flesh colored bumps around my mouth and on my cheeks went away after a week or so of using Protopic. It's been about a month and a half since then and the area around my lips is still cracking and feels as if there's a bunch of tiny paper-cuts there. I assumed that I perhaps had some version of angular cheilitis (lip licker's dermatitis - even though I don't lick my lips). My derm said the lip sensitivity means the inflammation is still active and prescribed the Opzelura. I'm surprised that I wasn't given first line treatments like a course of doxy or the metro cream. Should I advocate for those as well (or instead)?

For context, I've tried no therapy (for close to two months), cut all actives, tried zinc creams, switched to a SLS-free toothpaste, only use vaseline on my lips, don't drink or smoke, have an anti-inflammatory diet, and now even stopped eating spicy foods. I also have another inflammatory condition (chronic, reoccuring folliculitis and multiple forms of alopecia, including an inflammatory one -- both emerged about a year ago). I actually was also prescribed Opzelura earlier this month for the alopecia, but I haven't been on it long enough to have thoughts about it.

I'm having a mild inflammatory flare. Just visited my derm and some pinkness was found on my scalp; I was given steroid shots and was recommended to restart topical steroids. I honestly don't want to restart the topical. I had a major flare up earlier this year and was using topical steroids twice a day at that point and I honestly don't think it helped at all. I ended up losing the most amount of hair I ever have during a flare. Maybe I would have lost even more if I didn't use the topical, who knows. But I definitely experienced some skin atrophy / thinning, skin lightening, and acne because of it.

Has anyone else felt like topical steroids didn't help and chosen to not use them? How'd that go? And how'd you manage symptoms otherwise?

[Editing to say that, since the inflammation is only mild / my scalp is only pink, as opposed to bright red, I'm wondering if foregoing the topical would not be so bad.]

I've been on oral min for about a year now -- started at 1.25 mg in June 2025 (was on topical min 5% before that), upped to 2.5 mg in Feb 2026. I also started oral dut in June 2025 but stopped it for a few months, resuming again in Feb 2026.

When i started oral min and dut last year, I was lucky and saw relatively good results by the 3 month mark. But I've been on this higher dose for five months now and have seen almost no re-growth. I went through what I think was maybe a TE episode between Jan to April-ish of this year. Difficult to say -- think I was also experiencing some level of dread shed during that time.

What makes me concerned is that my eyebrows have gotten thinner, and my facial hair growth has changed. I've had to shave my face every month since starting topical min, up until last month. This is the first month in *18 months* of using min I haven't had any noticeable hair growth. Of course, not a desirable side effect, but I would rather have that and know my scalp is growing. I can't tell if 1) I'm just responding to the meds more slowly than normal, 2) have become less responsive to the meds, or 3) experienced scarring that's preventing regrowth.

Has anyone else become progressively less responsive to min? Or upped their dosage and seen no / worse results?

I think I've had mild PD since I was a teen and that mine is seasonal, triggered by dryness and the cold. In the past, stopping skincare and using Cicaplast or Vaseline for just a few days would resolve it.

Last January, I started tret (.05% gel), introduced it slowly. I never took out any actives / didn't change my morning skincare routine, and I didn't experience any irritation or purging. By the end of the year, I was using it every single night and sometimes even on wet skin. I had the best skin in my life, everyone was complimenting me. I was also using it around my mouth as well, no irritation. My skin barrier literally never felt compromised or damaged at all.

In November, I started using topical and injected steroids on my scalp for an unrelated issue. By January of this year, the seasonal dryness around my mouth returned. I stopped tret and all actives for over two months, but it didn't help at all. My barrier only continued to feel and look worse. I suspect the steroids are responsible for why my PD lasted longer than it ever has (no other changes to my routine or environment).

I've tried: no therapy for months, switched to SLS free toothpaste, zinc / diaper cream, cicaplast, vaseline, cut makeup, stopped hot showers, about to put in a humidifier, etc. Reintroducing azelaic acid a couple months ago dramatically helped with overall texture and bumps, itchiness, and stinging. But I still had persistent sensitivity around my mouth and smile lines, plus flesh-colored, uniform bumps on my cheeks.

My derm recommended I continue tret, lower dose (.025%, this one is a cream), on the unaffected areas - forehead, cheeks. I'm now 5 weeks in at twice weekly. I think / hope the cheek texture is going down, it's definitely not getting worse. I apply a thick barrier around the mouth, ensure no transfer during the routine, do it a few hours before bed, and sleep on my back. The mouth texture is also basically gone now (I'm unsure if the remaining cheek texture is from cutting all my acne related products, tret purge, or irritation). but there is still persistent dryness and stinging around the borders of my lips and above my lip, to the point where my derm kept asking me if I lick my lips (lip licker's dermatitis) but I almost never do!

My derm now gave me protopic to use around my mouth, but said to continue tret in the rest of the areas (since I don't have any sensitivity there / my barrier feels fine). Everyone recommends against tret on this page so I feel like I'm at such a loss. Should I cut it again? I'm on day two of protopic right now and am experiencing the warm / burning feeling side-effect. My mouth area feels worse than it did before. I'm going to give it a few weeks. But I also have no idea how to assess if things are improving since the mouth texture / bumps are already mostly resolved.

Has anyone's PD acted this way? Texture going away after a few months, but persistent dryness, stinging, cracked, feeling of heat above and around lips? What helped you? What helped me in the past didn't do anything this time, so idk what else to do