Am I becoming Universalis?? Please read.

Hello! I have about 40% hair loss on my scalp and after 7 months of cortisone shots it is slowly starting to regrow around the edges of the bald patches. Yesterday I noticed I lost some body hair on my stomach. Is it possible to turn to AU before becoming totalis? Is it possible to loose patches everywhere? I am kind of freaking out! Please share your experience, knowledger and hope!

Thank you!!! <3

Views: 358

▶ Reply to This

Replies to This Discussion

Permalink Reply by Pamela on May 6, 2017 at 2:21pm

I didn't know AU was different than totalis.  I have nooooo hair anywhere and have been this was way a loooooong time.

Permalink Reply by bibby on May 6, 2017 at 7:36pm
I too don't know the difference between totalis and universalis. I had about 40% scalp hair and nowhere else effected in 2014. 2017 I have a penny sized circle of terminal hair and about 200 miniature and unrecognisable hairs on my scalp. 50% beard. All my eyelashes remaining, 40% eyebrows remain, and under arm hair fully remaining. Curiously also the hair on my fingers remains. Arms zero hair, legs zero hair, chest zero hair, nether regions 90% gone. This is my experience. Going to turkey soon for xeljanz as I'm not accepting this condition. Seems to offer a good 70ish % chance of success of regrowth.
Permalink Reply by hagster on May 6, 2017 at 8:56pm
Are you close to Turkey? Does it have different drug regs than the US?

You might want to read the Xeljanz discussion before making a decision.

Yes, regrowth, but very expensive (a/ $3-4k a month in the US) unless you're in a study. Study ends and the cost is on you. Insurance won't help as its an off lable use. Quit taking and you'll lose all your hair again. Won't be available as generic for about another 10-15 yrs.
Permalink Reply by hagster on May 6, 2017 at 8:46pm
Had 1 small circle of AA 17 yrs ago. Hair grew back and life was normal. Then got Granuloma Annulare over entire body in 2015 which went into remission after surgery in May 2016. Thank goodness. That Nov my hair started falling out and lost ALL hair everywhere on my body within 2 months, so diagnosis was AU. (Both are auto-immune diseases, as is my Hashimotos.) No fuzz, no nuthin' since then.

From what I've learned, AA is only on the scalp, AT is anywhere above the neck, and AU is the entire body. 'course not everyone will fits those specifics.
Permalink Reply by cathy on May 7, 2017 at 2:55am

I too have notice a tone of hair loss, about 40% of my hair is gone, nothing works and its been 3 years already. I have tile flooring and have to sweep every day or my house would look like a barber shop. 

Permalink Reply by Dominique Cleopatra on May 8, 2017 at 7:15am
I have had patchy scalp loss for like a decade, sometimes more spots, sometimes less. Recently, I noticed a few spots on my body and I have had thinning of one eye's lashes for some time. I was also concerned I was turning AU. Only time will tell, but it hasn't happened at all yet.
Permalink Reply by Tom on May 20, 2017 at 5:34pm
I have universalis. As far as I know totalis is from the neck up and AU is everywhere. I have no hair from the top of my head to the bottom of my feet.
Permalink Reply by Pamela on May 21, 2017 at 9:08am

I don't know the difference either.  I have no hair anyplace either.

RSS

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2024   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service