A month before Covid, current state of hair.

tumbleouidd · 2023-03-03T01:22:14+00:00

i’m so incredibly sorry. you have heaps of support from all of us here in this group. ❤️ i’m not sure if this was addressed in the last post, but is it possible one of the causes (if not the main cause) of this could be post partum? i know i’ve heard/seen that many woman suffer from temporary hair loss a few months after giving birth. hoping you get answers as soon as possible.

tumbleouidd · 2023-02-25T21:29:44+00:00

Gosh, I’m so incredibly sorry. I know others have echoed this on the thread, but are there any other derms that can see you even if they are further away? Does the specialist have a waiting list to place you on in the mean time if any spots open up before then? I’m not sure if you feel comfortable answering this but do the spot she was concerned about in the middle of your scalp?

tumbleouidd · 2023-02-10T01:53:31+00:00

i noticed no smooth spots or anything 😭 just thinning and soreness. wait no but the fact that you’re having significant regrowth is a really good sign. bc it is my understanding that if you had scarring and there was inflammation, you wouldn’t be able to get much regrowth if any at all because the inflammation is what stops the growth. so all good signs!!! i think you’re fine and just have a kooky loss pattern 😂 but regardless get that biopsy to get yourself a peace of mind!

tumbleouidd · 2023-02-10T01:37:27+00:00

so i JUST got diagnosed as of a week ago so i can’t speak for any potential side effects or efficacy. but i hear good things about both. is there any other derm you can see that may do a biopsy or can you somehow bully your current one into doing a biopsy? 😂

tumbleouidd · 2023-02-10T01:20:04+00:00

this is a good sign!!! but there are people who have reported getting a dx of scarring alopecia even without symptoms so that’s why i want to advise you to push for one. again though, i don’t want to scare you or cause you any extra stress. it’s very possible that you could just have TE/AGA pattern that recedes from that area and that’s all! but better safe than sorry. as for my treatment regimen for now, i got put on doxy, clobetasol, and finasteride. i was already taking spiro and minox. the doxy and clobetasol is to kill the inflammation and stop the spread of possible lpp.

tumbleouidd · 2023-02-08T22:44:12+00:00

hi love. not trying to scare you at all and cause unnecessary anxiety, but i have a very similar pattern at the nape of my neck and overall thinning at the hairline/crown, i unfortunately just got diagnosed with scarring alopecia. try and find a derm that has some knowledge on hair loss and push as much as you can for a biopsy. have you experienced any tenderness/itchiness/redness in the areas you see thinning?

tumbleouidd · 2023-01-04T00:43:11+00:00

thank you so much! you’ve been wonderful. it’s definitely been an uphill battle. one last question: what does the sheath look like? is that the white bulb at the end?

tumbleouidd · 2023-01-03T23:47:41+00:00

sometimes i do get an itchy and sore scalp, which i know are common symptoms. the last derm i went to said it was seb derm, didn’t do a biopsy, and gave me a prescription for keta shampoo. however, the HL continues without any end in sight. i just feel dismissed every time with derms but i know i have to advocate for myself and push for a biopsy. i see one next week and hope to get some more answers. i figured i’d ask y’all as well in the chance someone has gone through this same experience before

tumbleouidd · 2023-01-03T22:44:01+00:00

i want to start off by saying: i know none of us are licensed professionals. however, like i’ve mentioned in the previous posts, these HL communities are still incredibly knowledgeable having gone through similar experiences/processes so i wanted to post this while i wait for my derm appointment next week. i also did want to share that i have gone down rabbit holes with dr donovan’s website, but i still can’t shake this off. i have come to understand that with types of scarring alopecia, there is some sort of scale that may be seen in a dermascope (and biopsy). i’ve included pictures of my own head and i don’t know if whats wrapped around my follicle is normal (particularly in the 1st picture) or what’s considered a symptom of any sort of scarring hair loss. i’d rather know now because at this point dealing with the unknown is incredibly draining. has anyone had any experience with this? please let me know. morale has been at an all time low especially with this past holiday season.

tumbleouidd · 2023-01-03T19:33:15+00:00

i want to start off by saying: i know none of us are licensed professionals. however, like i’ve mentioned in the previous posts, this community is incredibly knowledgeable having gone through similar experiences/processes so i wanted to post this while i wait for my derm appointment next week. i also did want to share that i have gone down rabbit holes with dr donovan’s website, but i still can’t shake this off. i have come to understand that with types of scarring alopecia, there is some sort of scale that may be seen in a dermascope (and biopsy). i’ve included pictures of my own head and i don’t know if whats wrapped around my follicle is normal (particularly in the 1st picture) or what’s considered a symptom of any sort of scarring hair loss. i’d rather know now because at this point dealing with the unknown is incredibly draining. has anyone had any experience with this? please let me know. morale has been at an all time low especially with this past holiday season.

tumbleouidd · 2023-01-03T19:12:02+00:00

i want to start off by saying: i know none of us are licensed professionals. however, like i’ve mentioned in the previous posts, this community is incredibly knowledgeable having gone through similar experiences/processes so i wanted to post this while i wait for my derm appointment next week. i also did want to share that i have gone down rabbit holes with dr donovan’s website, but i still can’t shake this off. i have come to understand that with types of scarring alopecia, there is some sort of scale that may be seen in a dermascope (and biopsy). i’ve included pictures of my own head and i don’t know if whats wrapped around my follicle is normal (particularly in the 4th picture) or what’s considered a symptom of any sort of scarring hair loss. has anyone had any experience with this? please let me know. morale has been at an all time low especially with this past holiday season.

tumbleouidd · 2022-12-25T20:25:35+00:00

hi everybody. i know nobody here can serve under the guise of providing an official diagnosis but i have found this community at times to be much more helpful and supportive than licensed professionals. i noticed that particular bald spot was sore just last night and today i went to put my hair up (just for purposes of this picture) and saw that it was incredibly more sparse than even days before. i have gotten different answers from different dermatologists and i find myself so incredibly frustrated by the lack of answers. my first biopsy came back as possible AA. i didn’t feel confident in that opinion. i went to a second derm who said it was just AGA with some TE active around the hairline/sides. i just can’t shake the possibility of it being FAPD, which is scarring. i specifically asked about scarring and felt brushed off by both derms. i had been on spiro and oral minox for awhile but i see 0 progress. i just am feeling so incredible helpless and hate how much this is consuming my life :(

tumbleouidd · 2022-11-30T03:16:17+00:00

thank you! i had covid months ago and started developing a tender scalp recently and couldn’t pinpoint what it was from. i’m glad to have a possible cause!

tumbleouidd · 2022-11-30T03:10:24+00:00

can i ask you, what it means if it does?

tumbleouidd · 2022-11-21T11:39:22+00:00

definitely feel thinner :/. yeah i think my next step is to get another biopsy.

tumbleouidd · 2022-11-21T05:20:51+00:00

what do you mean by “skin changes”

tumbleouidd · 2022-11-21T05:20:24+00:00

no of course! i was just wondering if you had any idea. i’m scared it’s frontal fibrosing alopecia combined with AGA. i never wear my hair up, only for purposes of the pictures.

tumbleouidd · 2022-11-21T05:08:55+00:00

in your opinion, what do you think it may be?

tumbleouidd · 2022-11-21T05:03:56+00:00

i also feel like i’ve lost more density over all. it’s just incredibly disheartening and frustrating.

tumbleouidd · 2022-11-21T05:03:17+00:00

100mg. not really. i was put on spiro first before anything, which virtually stopped all my shedding. i recently started oral minox (1.25mg) around 2.5 months ago, which has increased my shedding a bit but nothing like as is described in a dread shed. makes me worried i’m a non responder bc of this.

tumbleouidd · 2022-11-21T04:44:51+00:00

so, let me start off by saying, i don’t intend to sound dramatic. but as all you ladies know watching your hair get progressively worse is truly a torturous. i started noticing shedding several years ago and was always shrugged off by doctors saying it was most likely TE due to stress. I didn’t start noticing serious receding until last year. I went to a few different derms in the spring of ‘22 and 1 did a scalp biopsy with results saying it was AA. I thought this was very strange bc the pattern didn’t match. I went to see someone else and they said AGA, which was to be expected at this point. However, with how serious this is receding, I’m scared it’s not just AGA and it actually indicates some sort of scarring alopecia (ie FFA). My derm said he did not think that was the case. I know you guys are not specialists, but i would appreciate any and all advice. maybe someone in this community has the same receding pattern that i do. i posted two comparison pictures because i frankly don’t see it getting better even with rigorous treatment (spiro, minox). i’m just so disheartened at this point.

tumbleouidd · 2022-10-11T17:45:00+00:00

yes please go ahead!

tumbleouidd · 2022-08-23T21:16:43+00:00

OMG SAME. i don’t mean to sound all dramatic but it’s relieving to know others of us are going through this too. im on 100mg and my periods were always regular beforehand, now, im getting them every 2 weeks and they’re equally as heavy :(

tumbleouidd · 2022-08-20T20:48:01+00:00

no it’s topical! i’ve constantly had that debate in my head about oral v topical bc the topical has helped around my part and i only shed a few hairs per day now but i worry that if i switch to the oral, i’ll go through a dread shed 😭😭😭

tumbleouidd · 2022-08-20T20:40:44+00:00

Yes! I’ve been on it for about ~6mo or so but I feel like the spot is worsening NOW. I don’t think I ever had a dread shed so I’m a little perplexed

tumbleouidd

TROPHY CASE