Questions regarding your AU

I want to create this discussion that we can always go back to and analyze to understand some reasons for having Alopecia Universalis and possible helpful treatments

1- do you have AU?
2- when was the first ever onset of spots i.e at what age?
3- why do you think you developed it (hereditary, stress, hormones)?
4- do you have other autoimmune diseases?
5- any advice for treatments? Did your hair come back?

I am looking forward for your replies. I know many people are not active on this site anymore
But the more we can collect answers the better.

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Permalink Reply by bibby on December 27, 2016 at 9:42pm

1- do you have AU? :- Yes 
2- when was the first ever onset of spots i.e at what age? :- Aged 10
3- why do you think you developed it (hereditary, stress, hormones)? :- 100% unknown 
4- do you have other autoimmune diseases? :- Dermatitis 
5- any advice for treatments? Did your hair come back? :- I had AA for 30 years , Now AU for 3 years. Hair grew back once with DPCP and regrowth last year which lasted 5 months with no treatment but fell out again completely. 

Permalink Reply by Patchylatchy on December 28, 2016 at 2:33am
Appreciate it bibby..are you trying xeljanz out?
Permalink Reply by michael.kiyoshi.salvatore on December 30, 2016 at 2:17pm

1- do you have AU? - yes
2- when was the first ever onset of spots i.e at what age? - i was 21, i lost the hair on my head quickly over 4 months, and the rest of my body hair by half a year later. eye lashes went last


3- why do you think you developed it (hereditary, stress, hormones)?

physical stress - the onset was 3 months after jaw surgery. i think the surgery just made my jaw worse. not a day goes by that there isn't a pain or something that i get self-conscious about

emotional stress - my partner was raped during this time and i was his only emotional support during his slow aggressive episodes towards healing

i'd also say i've always been a negative, emotional person.


4- do you have other autoimmune diseases?

no - my doctor said i don't have a genetic predisposition, but i'm adopted so i don't know if there are other factors to consider.


5- any advice for treatments? Did your hair come back?i tried squaric acid intermittently for a year but nothing happened from that. i've gotten single eyebrow and eye lash hairs here and then.

thanks for taking this survey. i hope more people respond.

Permalink Reply by Patchylatchy on January 1, 2017 at 4:54am
Thank you so much. I hope more people reapond too..
Permalink Reply by Hannah on December 30, 2016 at 5:37pm
1) Yes, I've had AU for about 6 years now
2) I had spots when I was younger and those were thought to be by stress (e.g. I had a small spot a few months after my great-grandma died or we moved), but they always grew back. The summer before my Freshman year of high school (now a Junior in college), my hair started falling out rapidly and was gone before school started. Then by Christmas, eyebrows, eyelashes, and body hair was gone.
3) Stress when I was younger. Now? Not sure.
4) Nope, not that I know of
5) I did the topical cream and steroid injections for a while, but there was no lasting growth. I had a period my Freshman year in college where I had substantial growth for a while, but it never fully came back and quickly was gone again. I usually have small, random patches of hair on my arms/legs or a few eyebrows/eyelashes but that's it.
Permalink Reply by Lizzy on January 1, 2017 at 2:03am
Yes AU for 40 years
Age 12 ophiasis rapid progression to AU
Physical and emotional stress were my triggers but family members had AU
Yes a good collection! asthma execema psorisis endometriosis and pots
No treatments helped so stopped at age 14 had only one good regrowth after first child but fell out overnight, only the odd vellus hair since age 21
Permalink Reply by Patchylatchy on January 1, 2017 at 5:08am
I didnt know endometriosis is autoimmune! Thanks for sharing!
Permalink Reply by Lizzy on January 1, 2017 at 4:25pm
There seems to be a difference of option on endo some say it is autoimmune . Some say it can be a result of autoimmune but which ever you believe it is a result of inflammation .i do believe that all these things are connected in some way,
Permalink Reply by Universal1984 on January 2, 2017 at 10:39am
I have AU,I'm 32 it started with a patch on my beard December 2015. It took 4 months to move to my head, then my hair fell out within a few weeks totally. After that around 4 months and hair everywhere else went. I was very stressed at the time which is why I think it started. I don't have any other auto immune issues, I tried PUVA it didn't work, now I'm on a drug called ciclosporin, if that didn't work I'll be getting a vacuum wig. To say I'm devistated is a understatement.
Luckily I have the best GF and family in the world.
Permalink Reply by Patchylatchy on January 2, 2017 at 11:14am
Thank you. Have you ever had spot before being 32? For example during childhood? Also would you consider taking xeljanz?
Permalink Reply by Universal1984 on January 2, 2017 at 11:36am
Around 28 I got a few spots on my legs, but they went, at around 30 I got a few on my chest and stumach but they to recovered.
I would take it yes, as long as I was monitored by doctors to check I was ok, as I think it's still in trial periods but it's not an option in the uk, so for the forseeable future I don't think I will be able to.
Permalink Reply by Patchylatchy on January 2, 2017 at 12:01pm
Please people help us out by answering this survey!! Much appreciated

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