Anyone who has had patchy hair loss for a long time... total hair loss?

How long does it take for hair to grow back in the different patches on average? I've found things that say 3 months? I know this condition is unpredictable. I just feel lost in not knowing what is normal progression. My daughter had one very small spot in the end of November that grew to a quarter in January over night. It was then unchanged until the end of March when it again grew. This time much larger and again over night. That same time frame the center of the large spot has minimal hair growth. The second week of April 5-6 more spots showed up again over night some quarter size some smaller. The original spot is slowly growing larger this month and more very small like the top of a pencil eraser spots are seemingly popping up just this past week. Nothing really seems to have any re-growth. Is this how totalis starts or do some people have small spots all over for life that don't regrow? I'm still able to cover them for the most part by styling her hair. I just don't know how to know if this is going to continue to progress or if one day she will wake up with no hair at all?

Views: 148

Comment by patty from NJ on May 12, 2015 at 1:44pm

My daughter is 8 years old.  It is ~ her 3rd episode with alopecia that began when she was 4 years old.  This most recent time (it began 2/14), she lost ~ 75% of her hair over the course of ~ one year where she would get new spots, old spots would get larger, and finally old spots would regrow even after many months of only getting new spots.  Most of her spots have spontaneously regrown (15 months later) to where she currently only has ~ 10% of hair loss, the largest area being ~ 2 1/2 inches round.  Soooo, in our case, just as new spots would appear overnight, so too did the hair regrowth!  I felt as you, wondering and believing we were on the way to totalis or universalis, but out of the blue, the hair on her head began to regrow (she still has no arm or leg hair).  As you probably know by now, it is so unpredictable.  Remain hopeful....just as new patches seem to appear, so too can the regrowth.

Comment by doodler on May 26, 2015 at 2:15pm

I've had spots for 30 years (and a big fallout early on).  Some spots fill in quickly (1 or 2 months), and some can be very stubborn and stay around for 6 months.  Is your daughter getting kenalog (cortisone) injections?  Regrowth is usually faster with the injections.  Make sure to go to a dermatologist who does mini-injections so it won't hurt much.  I don't know what kind of AA it will be -- but it seems to be going slowly at least, maybe that's a good sign.  Check her teeth out too -- really, see if she's got cavities.  I really believe there's a connection there (even though it doesn't cause AA, tooth problems can aggravate it).  I wish she has a full turn around very soon.

Comment by Dominique Cleopatra on June 30, 2015 at 6:19am
Most people with alopecia areata (patchy bald spots) never progress to totalis or universalis. I have had AA, with spots that come and go, for years. I still have all my body hair, and most of my eyebrows and lashes. A lot of my spots have been filling in lately, but I'm still bonding my hair system, until, or if, most of my hair grows, and stays back.
Comment by JessicaU on July 15, 2015 at 10:50pm

Thanks everyone for your answers. I'm navigating this site a little better now. I haven't spent much time on here except the last couple of days. I try to spend most of my time hanging out with my kids rather than on the computer. :) I am coming to terms more with her diagnosis and all I really want is for her to love herself.  Make the best of things and don't worry too much about what might happen. Hopefully it doesn't progress further but if it does it's just hair. We are trying the kenolog injections and she said they don't hurt much. That's my brave girl! Also we will check out the dentist - thanks!

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