At the dermatologist awaiting another round of steroid injections into my scalp!
Very metal. 💉💪🤘
#lichenplanopilaris — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #lichenplanopilaris, aggregated by home.social.
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CW: Unflattering closeup of my scalp
On more of a bummer note, I admit I’m struggling to accept the reality of scarring alopecia: the hair I’ve lost simply isn’t coming back. What’s gone is gone, and the follicles that remain are, like, narrower—so my surviving hair is, like, shittier looking. I’ll live. It just sucks.
#LichenPlanopilaris
#FrontalFibrosingAlopecia
#HairLoss
#FemaleHairLoss -
CW: Unflattering closeup of my scalp
Just got back from the dermatologist. Pleased to report that I got a bunch of steroid shots in my scalp. 💪💉🤘Very metal; extremely badass.
#LichenPlanopilaris
#FrontalFibrosingAlopecia
#HairLoss
#FemaleHairLoss -
Beyond that I’ll keep on keeping on with the usual topicals & orals—and until I see her again in six weeks I’ll stay on the “extra” topicals & orals the PA perscribed for the #folliculitis. Which seem to be working, for although my scalp is visibly inflamed the wretched itchy bumpiness has abated for now.
#LichenPlanopilaris
#FrontalFibrosingAlopecia
#HairLoss
#FemaleHairLoss -
The wonders that awaited: ~20 steroid injections in my scalp. Very metal. 🤘💉
#LichenPlanopilaris
#FrontalFibrosingAlopecia
#HairLoss
#FemaleHairLoss -
Back at the dermatologist! What wonders await
#LichenPlanopilaris
#FrontalFibrosingAlopecia
#HairLoss
#FemaleHairLoss -
CW: Mildly gross; might be TMI? Scalp stuff.
A development: got a voice mail from the PA saying she had coded my condition as just “alopecia,” which I guess = hair loss = not covered. She’s switching it to #LichenPlanopilaris, which *should* be covered? 🤞🏻
Still some bullshit that First Choice doesn’t cover regular flavor alopecia, so I absolutely am mad about the whole thing regardless.
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CW: Mildly gross; might be TMI? Scalp stuff.
Aaand the punchline is First Choice Health’s customer service number is done for the evening. They’re only available during regular business hours so I’ll just have to take time away from work on Monday and hope I can get through then. Cool. So cool.
🔥😬🔥
#LichenPlanopilaris
#FrontalFibrosingAlopecia
#HairLoss
#FemaleHairLoss -
CW: Mildly gross; might be TMI? Scalp stuff.
I’m shocked. My heath insurance is pretty Cadillac by Americans standards. And, uh, even leaving aside the WTFery of not covering hair loss, my hair loss is due to an autoimmune disorder? Like, what are we doing here.
I guess I get to embark on the fun new experience of yelling at my insurance provider so I don’t have to pay out of pocket for every treatment to postpone baldness. 😕
#LichenPlanopilaris
#FrontalFibrosingAlopecia
#HairLoss
#FemaleHairLoss -
CW: Mildly gross; might be TMI? Scalp stuff.
Lol, so. No injections for me this time because apparently the itchy grossness and gross itchiness is #folliculitis. So I have a prescription to pick up to deal with that, and then in three weeks I’ll be back to get more steroids shot into my scalp. 💉
That’s all well and good. The only actual problem? Apparently my insurance doesn’t cover “hair loss.” 🔥🙃🔥
#LichenPlanopilaris
#FrontalFibrosingAlopecia
#HairLoss
#FemaleHairLoss -
CW: Mildly gross; might be TMI? Scalp stuff.
Heading to the dermatologist for a follow-up. Good timing, as my scalp has been alarmingly itchy and bumpy and just uncomfortable these last few days. I think the PA is going to inject more cool steroids into my scalp, so I’m definitely excited about that.
#LichenPlanopilaris
#FrontalFibrosingAlopecia
#HairLoss
#FemaleHairLoss -
I got something like 12-15 steroid injections in my scalp! Extremely metal. Thinking @falcennial’s burrito-and-(near)-beer suggestion may be a winner in terms of post-appointment self-soothing.
I’ll be back for more 💉 in six weeks, & we may double my dose of hydroxychloroquine at some point. For now I’ll keep up with my current dose of hydroxychloroquine, my topical steroid, & my Rx shampoo.
#LichenPlanopilaris #FrontalFibrosingAlopecia #HairLoss #FemaleHairLoss
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Wait, I lied. One more post so I can append a bunch of maybe-relevant hashtags to this little thread on the off chance it's of interest to anyone else out there. Ahem:
#HairLoss #alopecia #balding #minoxidil #Rogaine #FemaleHairLoss #ThinningHair #PersonalExperience #LichenPlanopilaris
#FrontalFibrosingAlopeciaI don't know how good an idea this is; several of those hashtags, to the extent that they seem to be in use, appear to be most heavily associated with folks selling stuff. Hm.
🤷♀️
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Final-for now post: minoxidil. The PA suggested it at my first appointment, & last time I was there she mentioned I could still go ahead & start using it if I want.
I have Mixed Feelings about minoxidil, especially because it's so dangerous to pets, so I haven't made up my mind about it yet. But it might be my only realistic hope for actually regrowing some hair (as opposed to "merely" preventing further loss & scarring.)
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...and if I had in fact sought help earlier, who knows? Maybe I would've gotten actual treatment five+ years ago and saved significant amounts of hair. :BlobhajSadReach:
Like, I'm grateful to have medicines to take and a board-certified Physician Assistant looking out for me now, and I'm hopeful that treatment means my scalp won't get worse and I won't lose more hair.
BUT WHAT IF I'D DONE THIS FIVE YEARS AGO LSdkfjdlkfjdkfjll... :AngeryCat:
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ANYWAY, I'm inflicting this moderately gross TMI on the internet because I think it's notable that a person can be absolutely preoccupied & distressed to the point of near derangement over something (my hair loss) and NEVER ONCE CONNECT IT TO THIS OTHER THING THAT'S ALWAYS BEEN THERE AND HAS ALWAYS BEEN A PROBLEM (my occasionally gross scalp.)
If I hadn't been so habituated to periodic scalp grossness, I might have sought help sooner...
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So yeah as far back as I can remember, my scalp would sometimes get...red and flaky and gross, with little itchy bumps and zits? And I never, like, thought to ask a doctor about it? 🤡
Looking back, I realize I always had some explanation at hand (dry weather, changed shampoos, maybe the scalp zits were hormonal like my face-acne that waxed and waned with my cycle, etc.)
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(This might be slightly gross, sorry in advance.)
One thing that's surprised me, given how all-consuming my concern over my hair loss has been over the last ~4 years, is how I'd managed to largely ignore the periodic itchiness and flakiness and, uh, gross-little-bumpiness of my scalp over MOST of my life?!
Once I started 'roiding up my scalp, it...mostly went away??
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Side effects I should be looking out for over time include skin thinning on my scalp (from the 'roids) &, apparently, vision changes from the hydroxychloroquine. (Which is also a bit of an immunosuppressant, I think? I'm still masking up most of the time so that doesn't trouble me too much.)
I squirt the 'roids on my scalp twice a day for two weeks then take a one-week break. I think I'm in the middle of my second two-week 'roid-squirting phase.
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Hey, what's been happening in the wonder-filled realm of #LichenPlanopilaris &
#FrontalFibrosingAlopecia?It's been just about a month, I think, since I dove into my exciting new steroid-and-hydroxychloroquine-fueled lifestyle. Things are going pretty okay, I think? I continue to rejoice at the fact my Rx shampoo is bright red like vampire blood; that's extremely good.
No side effects so far from the other medications (the steroids I squirt on my scalp twice a day + the hydroxychloroquine.)
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Used my new medicated shampoo for the first time just now and am delighted to report it’s bright red for some reason? It looks like a bottle of vampire blood from the costume shop.
Edging ever closer to my adolescent dream of living a vaguely Elizabeth Bathory lifestyle.
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Anyway apparently if left untreated this can lead to, like, scarring and permanent-permanent hair loss. Pretty relieved to know what’s up—and validated, frankly, that there is indeed Something Going On.
Oh and it’s possible that at some point the PA will inject steroids into my hair follicles? I’m disappointed that didn’t happen today since it sounds metal as heck.
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WELL. Visited the dermatologist’s office to get my sutures out and discuss the results of my scalp biopsy. Lo and behold there is in fact some diabolical autoimmune bullshit afoot on my scalp. I get to take an antimalarial drug and rub steroids into my scalp, plus I guess I use prescription shampoo now. 😎
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Interessant wäre allerdings, ob auch andere Lichen-Betroffene nach Covid bzw. mit Post-Covid derartige Erfahrungen machen. Denn ich kann mir vorstellen, dass Corona eine Autoimmunerkrankung wie Lichen planopilaris erheblich beeinflussen kann.
#Lichen #LichenPlanopilaris #LichenRuberPlanus #PostCovid #LongCovid
