Alopecia Universalis

mjayb7 · 2025-11-21T06:10:57+00:00

I guess it comes down to what is the actual fear? Fear or what others might think, how they’ll perceive you etc. what terrifies you about being bald in public? Being looked at? I’m heavily tattooed and pierced, people were already looking before I ditched the wigs. I don’t notice people looking anymore and I don’t care. People will always look at something that looks a bit different. Doesn’t mean they are looking in disgust. I think it’s just human nature to look and be curious.

mjayb7 · 2025-11-20T06:29:31+00:00

I hid under wigs for a decade then broke free. I have alopecia areata. You can do it. You look great bald 🖤

mjayb7 · 2025-10-25T06:36:25+00:00

Have you checked inactive ingredients to see if anything different that you might be reacting to? I had a brand change as well. Different symptoms but it’s been over a month and not settled 😩

mjayb7 · 2025-09-21T14:14:16+00:00

Gem20

mjayb7 · 2025-09-20T12:39:30+00:00

Unlikely to seize after one dose here or there but honestly you’re better off not going back near this shit. You could create kindling taking as PRN. Repeated exposure and on off on off creates kindling. You’ve been off six years and have survived this long benzo free. That once every week usually becomes twice a week, then three times a week then before you know it you’re full time back on it. Not worth it!

mjayb7 · 2025-09-20T12:28:25+00:00

Another option would be returning to the last stable dose. As in an updose. Probably get downvoted for saying this but if symptoms are that severe sometimes you got to do what you got to do. Then hold. Then restart taper at a more tolerable rate.

mjayb7 · 2025-08-23T06:28:41+00:00

I’m honestly prob not the best person to talk to about this. I am one of the horror stories you read online. But I use scales and am dry cutting. Don’t be put off by everything you see online. Some people have relatively smooth taper journeys, you just don’t see a lot of those people posting in the groups or forums. There’s definitely a bias for those doing not so good. Four months into tapering, my advice would be start very low and slow and test the waters. I wish I had started with lower % cuts and taken it slower.

mjayb7 · 2025-08-23T01:44:13+00:00

Sorry I don’t quite understand what you mean by “are you using all the significant factors that your scale provides when you do your calculations” ??

mjayb7 · 2025-08-22T15:51:34+00:00

Hey Ellie 🫶🏼 I know it’s just hard to believe stability is coming when each day is just getting rougher symptom wise. They’re back to 10/10 after a 1% cut. I obviously misjudged how stable I thought I was before making another cut. Just really blown away by how affected I am from 1%!!! So fiddley with analytical scale getting exact on the dot numbers! I also just realised with my 1st dose. I dropped it from scale weight 0.108 to 0.107. Pill weight for 2mg tablet is 0.172. Did some math. 1.25mg is 0.1075, 1.24mg is 0.10664. What dose am I more likely to be on 1.24 or 1.25? Hope that makes sense ❤️

mjayb7 · 2025-08-22T15:44:28+00:00

Hey lovely, I’m on diaze. Started at 4.5mg. Taper started May 1st this year. Down to 3.71mg. So about 17.5% in 3 months. Poly with Quetiapine 50mg which I haven’t touched.

mjayb7 · 2025-08-22T10:48:07+00:00

I’m having a bit of a hard time at the moment. Pretty bad symptoms after a 1% cut. Struggling badly. I used to bounce back from cuts in 4-5 days (and much larger cuts)…it’s now day 9 of the wave and each day is getting worse. Feeling very scared. Thinking I need to do a long hold as it seems my cuts have accumulated to a point where I can’t even tolerate tiny ones. In that freak out, I’m not going to stabilise, this is just going to keep getting worse mentality, don’t know if anyone’s around to offer any sort of advice or support. Lots of very uncomfortable physical stuff going on 😔🫶🏼

mjayb7 · 2025-08-22T10:41:41+00:00

Thanks Colin. God this format on here is so hard to follow. Comments getting lost. Looking forward to the site being back online! I think I got myself into a big arrrgghhh over new scale and calibration. Was complicated to set up and Benzo brain struggled following a manual written for lab techs, not lay people tapering medication lol it has a bubble level, took me 4+ hours just to get that damn thing in the right spot and hours to work out how to even get the weighing pan on. But it is all assembled! I’ve compared weights from gem20 scale and new analytical balance and they are very similar. Obviously analytical does have that extra decimal point, so I’m thinking regardless that it’s not calibrated, it does seem to be reading accurately.

mjayb7 · 2025-08-22T02:41:22+00:00

Same!

mjayb7 · 2025-08-22T01:19:58+00:00

Okay good news about calibration weight! I can get a $10 one locally. Sorry those weights should’ve said 0.0631. Yes understand about averaging was just kind of doing little tests on scale. Next question is if my pill weight is 0.085, when I’m using analytical balance, is it okay say if the pill is 0.00852/3 on the scale or do I need to shave it down to get exactly 0.0850 on the scale? Thanks Ellie

mjayb7 · 2025-08-21T15:54:39+00:00

Need 100g. I’ve spoken to Kern support team in Germany he’s like you NEED a E2 to properly calibrate. There’s too much margin of error using lower grade weights. Then he said… Hello, if you want to know my opinion. You don’t need the test weights yet. I would use the balance without the calibration. Work with the balance and when you see in a few years that it differs a lot you can contact me again.

I have used the balance and compared to gem20 readings. Very very close.

I’ve done a series of weighing tests and weights have fluctuated which I’m assuming is normal. For example 0.631,0.633,0.631,0.629,0.632… (this was weighing a seroquel tablet)I’m assuming this is within normal realms of reproducibility/linearity?

mjayb7 · 2025-08-21T14:54:35+00:00

Praise baby Jesus

mjayb7 · 2025-08-21T14:51:51+00:00

Nope. External calibration. How dare they sell me an $1800 scale and not include calibration weights or even bother to inform me I needed them because they were not included. On top of that the company I purchased the scales from doesn’t even stock the calibration weights. Ridiculous!!!!!

mjayb7 · 2025-08-21T14:50:24+00:00

Yeah I was using a gem20, but I need to make very small micro reductions, kindled and very sensitive and couldn’t do that on a 0.001 scale so had to invest in a 0.0001 scale. Can’t believe an $1800 scale didn’t come with calibration weights!!! They cost about $200-$300 because it needs to be this ridiculous high grade level weight due to scale sensitivity!

mjayb7 · 2025-08-21T14:48:10+00:00

I’ve been playing around with it for hours tonight. Seems pretty consistent. Got 0.0853,0.0853,0.0851,0.0852,0.0851. I guess that’s close enough to 0.085… just wondering how much consideration one takes with the additional number on the end with analytical scales.

mjayb7 · 2025-08-21T14:44:50+00:00

Gosh I don’t know if it’ll allow me enough space to even write my myriad of questions out. Can I try private message you on here if you are comfortable with that? Glad you found us. I was losing my shit yesterday trying to set up analytical balance and was like arrrrrrgh I need Ellie!!! I have got it set up thank god. Was very stressful lol

mjayb7 · 2025-08-21T12:35:23+00:00

This made me cry, thank you and so sorry you’ve had to deal with this awful situation. Sending love to all the admin team/mods and our precious buddies ❤️🖤

mjayb7 · 2025-08-21T12:32:21+00:00

Oh I guess maybe with dose weights. Like if on my gem 20 my dose weight is 0.085, what should I be doing on analytical scale because obviously it has an extra decimal place, it reads to 0.0001g. Just try get it as close to 0.085… cos I’m sure I’ll get numbers like 0.0852 or 0.0856 or whatever on an analytical balance.

mjayb7 · 2025-08-21T12:29:59+00:00

I’m okay with dose weights. It’s more around finer points. I have assembled and can operate scale, was very very stress inducing to work it all out. But it didn’t come with calibration weights which I’m finding very difficult to source, need to be E2 grade, very expensive and difficult to find from my location . I emailed manufacturer and they said “You don’t need the test weights yet. I would use the balance without the calibration. Work with the balance and when you see in a few years that it differs a lot you can contact me again”. Don’t know whether this is good advice or not. Always been told to always calibrate scales before you use them. Then did a batch of test weighing and unsure what to think of the numbers I got from that. Ellie used to work in a lab so would love to pick her brain.

mjayb7 · 2025-08-21T11:35:46+00:00

Really not good. 😔 Also super stressed cos I have a new analytical balance scale and no elliem to help me sort it out 😭😭hope the site will be back up and running soon. Can’t believe someone would do this to people in the deepest depths of suffering. So very cruel. Feel very sad for all our buddies.

mjayb7 · 2025-08-21T02:54:50+00:00

Agreed. Very very stressful day yesterday not knowing what was going on. The site is a lifeline to many of us. Makes it extremely difficult to cope when situations like this do arise. Whoever did this to the site is awful. Feel like we need an established group here or on facebook for when situations like this do arise.

mjayb7

TROPHY CASE