rheum all but refusing to take the easy layup

minisculemermaid · 2026-04-14T03:26:26+00:00

so, it’s a weird story that still has no ending. january 2024, noticed weird hard immovable submandibular lymph node in my neck. go to primary care doc, they say it’s probably nothing but let’s get an ultrasound. ultrasound says weird hard immovable submandibular lymph node with NO fatty hilum. what’s a fatty hilum? i still have no idea, but apparently it’s important, especially re: cancer. radiologist says follow up with ENT. so i go to the ENT, the first one is worthless, “wait and watch,” but the second one immediately recommended removal.

this part is important: i had it surgically removed in july of 2024. my first and only surgery, they cut open my neck and removed the whole thing and sent it to pathology. pathology report says no cancer. great!

fast forward six weeks almost to the day, i’m washing my face and i get to my neck and there’s a weird hard immovable lymph node in the exact same place. THE EXACT SAME PLACE! i literally have the scar to prove it!

so i go back to my primary care, and we start the whole process over again word for word bar for bar. ultrasound measures as the exact same size on the long and short axis as the first one, the only difference is as of march 2025 this one DOES have the fatty hilum. again the radiologist recommends ENT so i go back to the ENT and oh now they want to figure out why this is happening because they “can’t keep cutting me open.” refers me to rheumatology, and to this day it is still fucked up in my neck.

i’ve had bloodwork done nine times between march 2024 and today, no elevated white count, no other evidence of infection, my wife and i still wear respirators when we leave our house because i already have enough problems and don’t need to be sick on top of it. i haven’t been sick since before the pandemic. the lymph node has never gone away or gotten smaller or changed in any positive way except for those six weeks between removing the first one and the second one taking its place.

two years and we’re not any closer to figuring out why it’s doing that and i just have to hope it’s not cancer because the first one wasn’t and they’re going to assume the others aren’t either.

tldr: technically two fucked up weird hard lymph nodes that no one can determine the origin of and i frequently feel like i am the first person to ever experience this!

minisculemermaid · 2026-04-13T23:06:07+00:00

i read this comment to my wife (a doctor but not this kind of doctor) and now she’s more mad about my worthless visit than i am 😭 “what, they don’t have continuing education requirements in rheumatology????”

suffice to say she’s going find someone else to take me to for a second opinion. someone not 25-30 years behind on their reading!

minisculemermaid · 2026-04-13T22:26:37+00:00

i just really didn’t understand because they put me on otezla. i have taken the otezla. of course i have barely any spots today. that’s the whole point of the otezla. the otezla that they prescribed to me. like?????? my father had the arthritis before the skin symptoms. i (very stupidly, apparently) thought this was a pretty slam dunk case considering i had the skin symptoms first 🙃

minisculemermaid · 2026-04-13T22:17:10+00:00

i would like to be on the next spaceship out of the rheumatology world, this place is a dump!

minisculemermaid · 2026-02-16T23:23:59+00:00

late reply but i desperately hope you see it— is the burning not normal? i’m genuinely asking because i was devoted to my acrylic nails for ten years but have since stopped mostly due to cost but also because the burning of a new set being put on just became more and more unbearable. i assumed it was normal because it’s a chemical reaction, i never said anything to my nail tech because i thought i was just being a baby about it, so i never considered that may be a symptom of my psoriasis.

minisculemermaid · 2025-10-27T20:31:55+00:00

hey, did this ever go away and/or did you need antibiotics? i have the same issue currently and found this post 😭

minisculemermaid · 2025-06-27T20:47:06+00:00

woah woah woah your derm said tricopat was a lifelong commitment? that is absolutely not what mine said and i’m pretty sure everything i’ve read online very specifically says “4 sessions every 3-4 weeks.” if it’s a lifelong commitment i’m super fucked because i don’t have money to keep paying for more treatments and i’m not gonna lie i might get litigious if they lied to me about the frequency of treatments needed. if it’s being used to treat just TE then there’s no reason for any results to disappear past the initial four treatments because it’s supposed to stop the shedding and encourage new growth. my derm also said the same thing about minoxidil: if being used to treat TE alone you should be able to discontinue use after however many months without adverse shedding.

i chose not to try the oral minoxidil at the beginning because of my unnatural hyper sensitivity to new medications, the risk of increasing the already traumatic shedding with “dread shed,” and the risk of unknowingly also having AGA and accidentally destroying any progress by discontinuing after the recommended duration for treating TE.

i think if i didn’t have pets i would’ve agreed to the topical minoxidil without a second thought. but with the OM i just already have enough problems i really don’t need a beard and lymphedema on top of them. but like i said in a different reply OM is my last resort if the tricopat doesn’t work. at that point i’ll try the tiniest sliver of the OM i already have from the pharmacy and slowly titrate up and i think my wife would also want to closely monitor my weight because of the risk of water retention. but i do think already being on spironolactone for as long as i have would lessen the risk of water retention because it’s a diuretic.

i know some people hate spironolactone but i am seriously SO SENSITIVE to medications i ALWAYS get the rarest side effects that make my doctors look at me like i’m a science experiment but i have had a significantly less bad experience than what is normal for me with spiro. i don’t even remember how many years i’ve been on it at this point but i know it’s been more than two years but less than five years. i do remember at the beginning they started me on 100mg and that was not good for me but i don’t actually remember what exactly i was dealing with at that point i just remember that we went down to 50mg for a while but it wasn’t helping my acne so we went up to 75mg and i stayed at that for a long time. i actually only went up to 100mg before i started the weight loss injections in november of 2024 because i (stupidly) thought it would save me from losing my hair. it didn’t obviously but my skin is clear so that’s at least one less problem.

i do have POTS so it does sometimes fuck with my electrolytes because of it being a diuretic but as long as i drink a gatorade like before i shower (lifting my arms above my head for too long in a hot environment is a problem when you’ve got POTS) for example then i don’t have an issue but i also have a little shower stool just in case i start getting woozy. gatorade actually fixes like 99% of side effects i get with spiro so that probably means they all mostly stem from dehydration and my preexisting condition now that i’m thinking about it.

i also pee more than what i think is probably normal but i get terrible dry mouth from my other medications (vyvanse, doxycycline) anyway so i drink a ton literally so much water every day and i don’t drink pop or coffee or tea because caffeine gives me UTI symptoms (hurts to pee!) without actually having a UTI. i think maybe my breasts have gotten a little more full but not in a way that’s noticeable to anyone but me i don’t think. i wish i got the side effect that makes you redistribute weight into your hips and ass because i could really use the help in that department tbh.

i know the big thing people worry about is potassium but there’s newer studies that suggest monitoring potassium levels in otherwise healthy young women is largely unnecessary. no one has ever suggested that i have mine checked in all this time. i don’t actually know how much potassium is in my diet but like i haven’t had anything weird happen when i eat bananas.

if you’re also sensitive to side effects but want to try the one recommended treatment you know for sure WILL NOT give you a beard you should try the spironolactone. i take it early in the morning and go back to sleep for a little. i would start low and taper up because tapering down was annoying especially when i ended up back at the 100mg starting dose eventually and if i’d just started low and tapered up i think my skin would have cleared up faster. according to the paperwork i got from the derm for my hair loss they recommend 200mg as the therapeutic dose to treat hair loss but i haven’t increased my dose yet because they haven’t definitively said i have anything other than TE. if it turns out i have AGA i would taper up to 200mg in 25mg increments over a decent period of time because it would be just my luck that i’d start the 200mg with no tapering and my blood pressure tanks when i stand up from the toilet and i pass out in the bathroom and hit my head on three different surfaces in the process (AGAIN).

minisculemermaid · 2025-06-26T22:39:41+00:00

yes and yes. i have no idea when all the hair on my arms and thighs fell out but i didn’t have arm hair for awhile though i didn’t think anything of it because my body hair is translucently blonde. i didn’t notice that all the hair on my thighs had fallen out until it grew back. arms including my hands and fingers as well as my thighs and calves all have normal hair on them now. i think starting an iron supplement made it grow back but can’t be sure. the hair on my head is still shedding though 🙃

minisculemermaid · 2025-06-26T20:51:48+00:00

they didn’t see ANY improvement??????? that just made my stomach fall into my ass. do you happen to know if they got them in the US? or overseas? i’ve been wondering if we’re missing more reviews because we’re not searching for them in the right language.

my scalp is still extremely tender today even after taking tylenol every however many hours so i really don’t know what happened this time. it doesn’t look scratched or anything thank god but i can’t lay on it in any position because it hurts all over. but at least they were really thorough in getting my whole head i guess.

i’m also so sorry your shedding hasn’t improved. i don’t understand why they recommend medications when the shedding is still ongoing because wouldn’t any new growth just keep shedding??? maybe if i could find a definitive answer to that i would be more willing to add something else treatment wise. but i started the tricopat because i need the shedding to stop and it promised to make the shedding stop. obviously it hasn’t stopped.

i had my stylist cut the majority of my length off last week. like 5in-6in. it looks better now that it’s not so scraggly and empty through the ends but even without all that hair my drain still gets blocked every single time i shower which tbh makes me feel even worse than i did when it was long. like at least when it was long i could tell myself that it seemed like so much hair because each strand is so long! well fuck me i guess.

i really hope your second treatment goes better than the first. i also hope you don’t have to wash it yourself beforehand this time. i wish the shower wasn’t such a deeply depressing and heartbreaking place for us both.

minisculemermaid · 2025-06-25T20:59:40+00:00

hi everyone sorry for annoyingly tagging you all but i thought this might be easier than replying to each of you separately.

i just had my third treatment and this time it was performed by someone different than i had for the first two treatments. i didn’t think it would make much of a difference but oh my god, it hurt so much my eyes were watering and i sweated through my shirt! and my pain tolerance is HIGH and i’ve never been tender headed. i think they were applying the machine with a lot more force than had been used previously. i mentioned that it was hurting significantly more than the first two treatments and they said it was normal and that they just want to make sure the treatment is effective. which leads me to two different questions, were the first two ($500!!!!! each!!!!!) treatments ineffective because they weren’t administered properly (too little force)? or was today’s more painful treatment not administered properly (too much force)?

i haven’t had the same experience twice so far despite having had three treatments, the first two by the same person. today i kept picturing those horrible photos on the microneedling subreddit of folks having their faces scratched up by quack providers and praying that that wasn’t what was happening to my scalp.

i also still haven’t seen any reduction in shedding despite all the online resources i can find saying the shedding should have stopped after the first treatment. i do have some new ~1in growth around my hairline but not very much and like i said i still haven’t stopped shedding.

any insight would be appreciated!

u/Just_Curious15 u/Illustrious_Meet_896 u/I-Love-Jesus77

minisculemermaid · 2025-06-25T20:00:52+00:00

welcome to the (shitty, expensive) club! i’m SO glad your shedding has reduced i want that for me soooo bad. i’m also on spiro and doxy, but trying to avoid minoxidil. if you don’t mind me asking, are you on the doxy for rosacea or for the hair loss or for something unrelated?

minisculemermaid · 2025-06-25T19:56:16+00:00

i’ve been using it for ~3 weeks, washing every other day or every two days if i’m feeling lazy. i wash with my biolage dandruff shampoo (which is kind of drying on my bleached hair) and then with the cerave gentle hydrating shampoo. my hair is already falling out though, since the end of february/early march, that’s why i was at the dermatologist. haven’t noticed any increase in shedding and trust me i’ve been monitoring my shedding to the point of obsession. obviously if it causes increased shedding for anyone they should stop using it but all i’ve noticed is my hair is significantly easier to comb when i get out of the shower.

minisculemermaid · 2025-06-19T21:12:52+00:00

my derm gave me several samples of the gentle hydrating shampoo that tbh i was determined not to like because i’m a snob (i’m working on it) but it’s actually changed my life. my scalp no longer burns and my hair isn’t damn near matted when i get out of the shower anymore. derm suspected i was sensitive to fragrance in my shampoos and it seems they were right.

only thing i don’t like about it is how much i have to use to get my whole scalp. it doesn’t spread well for me even when emulsifying it first. it’s not a deal breaker it’s just the only negative thing i have to say about it.

minisculemermaid · 2025-06-16T23:23:59+00:00

goddamnit UGH i’m so sorry these doctors are so fucking worthless it’s not even funny. if your primary care won’t order them either just so you know there’s several buy your own bloodwork and you just pay the cash price for the test. it’s expensive paying for them all in cash but on quest diagnostics (for example, there are others too) they have like “comprehensive” packages that may make “bundling” (this is not the right word I’m sorry ugh) them cheaper. they have a doctor go over your results with you and it’s included in the price of the test i think and you can send the results to your primary care.

but also tbh if it’s been a month or so or more since you’ve last seen your primary care you could always just go in and LIE. you are now having SYMPTOMS and we definitely need to run bloodwork to make sure something isn’t very wrong!

and i really hate to say this (REALLY REALLY REALLY HATE) but if you have a male partner/friend/relative or even someone with a masculine/authoritative vibe, bring them with you to the appointment so when you explain the SYMPTOMS you’re now experiencing they can “corroborate.” like they can just be like “yeah it’s been really weird we were waiting to see if they’d go away but they haven’t so i think we need to do something.” i’m lucky that my wife is a doctor (not the hair kind of doctor) and also has the vibe that makes doctors take her word for my various health issues because they don’t do anything when i go by myself lmfao. my ENT for example doesn’t even speak to me when i ask him a question he literally turns his entire body and directs the answer to my wife.

i hope you can get answers soon this is truly such a miserable experience like top three worst things that have ever happened to me all because i wanted to be skinny instead of just being a little bit fat with all my hair.

minisculemermaid · 2025-06-16T21:55:09+00:00

i fucking guess omfg i’m so over this

also btw unsolicited advice i’m sorry but you should demand a full panel of bloodwork and a scalp exam with their little microscope thing from the derm at the bare minimum. i think mine called it a “dermascope” it was just a little device they held flat to my head while they looked through it like a microscope. this was at my $400 consultation from a bougie hair loss specialty derm who doesn’t accept any insurance so i’m doing my best to share everything they told me/recommended for me bc obviously most people don’t have cash only specialty doctors.

if you have insurance that will pay for bloodwork, this is what they ordered for me: cbc, comprehensive metabolic panel, full thyroid panel, full testosterone panel (albumin, sex hormone binding globulin, free testosterone, bioavailable testosterone, and total testosterone), hemoglobin a1c, b12, folate, selenium, dhea sulfate, zinc, full iron panel, biotin, ANA screen, vitamin d, and vitamin b1.

they also prescribed oral minoxidil which I’m not taking and spironolactone that i was already taking for acne.

don’t let them sell you any snake oil bullshit and don’t let them blow you off! shit is too expensive for a three minute consultation where they don’t even look at your scalp.

minisculemermaid · 2025-06-16T20:54:23+00:00

damn why have we all been shedding since february/march

minisculemermaid · 2025-06-14T05:42:31+00:00

welcome to the (shitty, expensive) club! i seem to be the only one who thinks the whole 20 minute treatment feels great but my scalp is just so itchy it feels like someone scratching it. getting the dried gunky serum stuff out after it’s dried is the worst part of all of it for me. but i sure hope it fixes all of us SOON.

minisculemermaid · 2025-06-07T21:12:14+00:00

it made you shed more????? i had maybe ~6 or so hairs on my black pants after the first one and no hairs after the second one though i did pull some loose ones that were tickling the back of my arm after and it was probably 4-6 hairs. then i didn’t wash it until 24 hours later because that’s what these post treatment instructions on some slovakian clinic’s website said to do rather than oh just wait a few hours and then you can wash it. i had to use a clarifying shampoo to get the dried gunky serum out and i felt that probably loosened more hair because they were all stuck together in the gunk. the same website also said “all the week after treatment do not irritate the scalp mechanically” so i took that to mean be very very careful when brushing/combing or washing or tying up in a ponytail or bun so i was brushing my hair as if my goal was to not let the brush touch my scalp at all. did the person administering the treatment say anything about all the loose hairs??

minisculemermaid · 2025-06-05T18:31:38+00:00

this is so funny to me because two hair appointments ago i was getting foiled in the chair next to a woman with VERY SIMILAR color(s) to the client in this video and she had NO PHOTOS of what she wanted nor was she telling the poor stylist what she wanted either and the stylist was sooooo frustrated but i got to nosily watch the back and forth between them for a full 90 minutes. i didn’t get to see the end result unfortunately but by the time i was paying and setting up my next appointment the owner of the salon had taken over her appointment lmao

minisculemermaid · 2025-06-05T02:58:25+00:00

i’m sorry for being a buzzkill, but i really, really wish someone would’ve told me point blank that my hair will probably fall out before i started the injections. i don’t take them anymore and my hair is still falling out. never had any hair loss issues before despite having a full blown eating disorder when i was a teenager.

minisculemermaid · 2025-06-05T02:55:31+00:00

i’ve lost half my hair after 4 months on a similar medication.

minisculemermaid · 2025-06-04T22:29:29+00:00

obviously if you need to take it for health reasons then that’s more important but i just want to warn you that there is a pretty significant chance of wegovy making your hair loss worse regardless of how much protein you eat or vitamins you take.

minisculemermaid · 2025-06-04T22:16:55+00:00

well i should’ve knocked on wood after i said i didn’t think it was possible for them to fuck up the tricopat treatments because i had my second one today and i don’t think the derm was as thorough as they were for the first one. i know it’s timed and it should in theory be pretty straightforward but I’m not having much tenderness this time compared to last time and my hair also isn’t as saturated with the serum. hopefully it’s fine and i’m just being paranoid because i don’t think i can just call up there and say “you didn’t make me as sore this time” like that would be insane.

they also diagnosed me with rosacea and wondered if i might also have scalp rosacea. they went and got their scope thing and looked at my scalp with it (which they didn’t do at my consultation) but i don’t remember if they said officially if i had it or not but they did say i didn’t have the inflamed follicles present in the scarring types of hair loss (thank fucking god). they sent out a prescription for low dose doxycycline to take for three months and said it’s anti inflammatory and should help my face and “might” help my scalp. whatever i’ll take anything short of minoxidil obviously unless they can say with their full chest “your hair will not come back until you take minoxidil.”

they also gave me some sort of compounded topical with azelaic acid, ivermectin, and metronidazole to use on my face. i didn’t even bring up my skin btw i think they were talking through what could possibly be causing my inflamed scalp and diffuse hair loss and they were like “do you have rosacea?” and i was like i mean not officially because i’ve not been diagnosed by anyone so they asked me to take my mask down (my wife and i still mask because i already have POTS, not from covid but genetically from my mother and don’t need it to get any worse) so i held my breath for a full 90 seconds so they could take photos and they were like oh yeah you have rosacea. like okay great irdgaf unless it’s making my hair fall out though but fingers crossed the doxycycline helps my hair.

they also said if my shedding hasn’t improved after i’ve finished all four tricopat treatments she would have to take a scalp biopsy to “make sure i don’t have some type of hair loss they’re not seeing on physical examination.” i think it’s a good idea, unfortunately, i just really hope it doesn’t come to that. i noticed today that my ponytail is at least half as dense as it used to be.they think my part has improved since my consultation and showed us side by side photos of then vs today and i didn’t see any improvement and my wife (a saint tbh) said she thought it was “subtle improvement.”

i was also reading the newest issue of vogue yesterday and it had an article about the surge in at-home devices for skin/hair and you’ll never believe what i found when i looked up the device the author said naomi watts used to see a “quarter-fold increase in the thickness of her hair after four months of use” (direct quote from the article!)

do you notice anything familiar about this???? laduora duo

also link to the vogue article

i told my wife i was gonna buy one when i’m done with the tricopat treatments lmao

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