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

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

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.
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.
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.

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. 

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.
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.

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



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