Alopecia World
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My story
My story began just over two months ago. I was getting ready to go out on a Saturday night, and noticed a bald patch on the right side of my head as I was drying my hair. I was a little freaked out, but read about it and asked a dermatologist friend who assured me it was Alopecia Areata and that it wasn't serious. He said given my age and no previous history of alopecia areata, that my prognosis was good. I made an appointment with a dermatologist to get the steroid injections.
I felt like my hair was falling out all over, but my friend suggested I was probably just noticing it more. I have always been acutely aware of my hair shed. As an asian female with classic long, dark, thick hair, my hair has always shed a lot - ever since high school. But, I never worried about it because my hair never seemed to thin. I knew what I was losing now was not normal.
The next two weeks my hair started falling out all over (no other distinct round patches). I likened it to being on chemo. Hair everywhere. After the first week, it was so bad that I went to my boss, crying, telling him I was not sure how this would effect my job. As a professor, I have to teach and at that point, I didn't know how I could deal with teaching a class full of students with the prospects of totally going bald becoming a fast reality. Because it was happening so fast, I just didn't have time to mentally prepare for any of this.
As a researcher by training, I quickly learned more about hair than I ever cared to know. I came across some recent medical journal articles written by Korean dermatologists suggesting a new subtype of AA with favorable prognosis, called "acute diffuse and total alopecia." I contacted one of the authors of the paper and explained my situation. He said it sounded like I had this and suggested the following criteria for diagnosis 1) rapid hair loss 2) predominantly female 3) average age 30 and 4) no previous history of AA. The good news, he said, is that the prognosis is really good. Almost all of the patients in his study regrew their hair, regardless of treatment, in 3-4 months after onset.
I wanted to see a derm who specialized in AA (my local derm was completely clueless) and worked every angle I knew nationwide to get in to see a specialist. I finally got an appointment with specialist at the University of Minnesota. She was great. We did another biopsy (first one by the useless derm came back funky ) and put me on clobex, nizoral, and antibiotic to get my scalp health back. The biopsy results suggested alopecia areata. She then added rogaine to the mix, to get help shift the hairs back into the growth phase. She said we would hope to see new hair growth at the 3 month follow up.
In addition to all of that, I am taking iron supplements since my ferritin, while "normal", was around 45 ng/mL, biotin, and acupuncture.
About 1.5 months after this nightmare started, I have noticed small hairs growing in the bald patch. 2 months later, I am noticing some small hair growth in other parts of my head. I am cautiously optimistic. However, my hair loss has picked up quite a bit in the past couple of weeks, and I am now fairly certain that I will lose the rest of my "old" hair while the "new" hair grows in.
Dealing with the hair loss has been emotionally exhausting. I have more hats and scarves than I know what to do with! I also have a great wig, which I will wear when absolutely necessary, but I haven't committed to wearing it every day.
I am interested in hearing other people's story, especially those who are similar to mine (the sudden, rapid and diffuse hair loss).
I felt like my hair was falling out all over, but my friend suggested I was probably just noticing it more. I have always been acutely aware of my hair shed. As an asian female with classic long, dark, thick hair, my hair has always shed a lot - ever since high school. But, I never worried about it because my hair never seemed to thin. I knew what I was losing now was not normal.
The next two weeks my hair started falling out all over (no other distinct round patches). I likened it to being on chemo. Hair everywhere. After the first week, it was so bad that I went to my boss, crying, telling him I was not sure how this would effect my job. As a professor, I have to teach and at that point, I didn't know how I could deal with teaching a class full of students with the prospects of totally going bald becoming a fast reality. Because it was happening so fast, I just didn't have time to mentally prepare for any of this.
As a researcher by training, I quickly learned more about hair than I ever cared to know. I came across some recent medical journal articles written by Korean dermatologists suggesting a new subtype of AA with favorable prognosis, called "acute diffuse and total alopecia." I contacted one of the authors of the paper and explained my situation. He said it sounded like I had this and suggested the following criteria for diagnosis 1) rapid hair loss 2) predominantly female 3) average age 30 and 4) no previous history of AA. The good news, he said, is that the prognosis is really good. Almost all of the patients in his study regrew their hair, regardless of treatment, in 3-4 months after onset.
I wanted to see a derm who specialized in AA (my local derm was completely clueless) and worked every angle I knew nationwide to get in to see a specialist. I finally got an appointment with specialist at the University of Minnesota. She was great. We did another biopsy (first one by the useless derm came back funky ) and put me on clobex, nizoral, and antibiotic to get my scalp health back. The biopsy results suggested alopecia areata. She then added rogaine to the mix, to get help shift the hairs back into the growth phase. She said we would hope to see new hair growth at the 3 month follow up.
In addition to all of that, I am taking iron supplements since my ferritin, while "normal", was around 45 ng/mL, biotin, and acupuncture.
About 1.5 months after this nightmare started, I have noticed small hairs growing in the bald patch. 2 months later, I am noticing some small hair growth in other parts of my head. I am cautiously optimistic. However, my hair loss has picked up quite a bit in the past couple of weeks, and I am now fairly certain that I will lose the rest of my "old" hair while the "new" hair grows in.
Dealing with the hair loss has been emotionally exhausting. I have more hats and scarves than I know what to do with! I also have a great wig, which I will wear when absolutely necessary, but I haven't committed to wearing it every day.
I am interested in hearing other people's story, especially those who are similar to mine (the sudden, rapid and diffuse hair loss).
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Comment by Jennifer Krahn on March 22, 2009 at 4:58pm
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This sounds like me! I was diagnosed in Feb. this year. Since the diagnosis of AA, without a biopsy, and she insisted on no injections...useless. I've lost a ton of hair daily. I too have thick hair, but I have developed 3 more patches and diffuse hairloss all over. i'm hoping to get to another derm this April for shots. I'm a teacher in high school and have recently taken a leave of absence due to the AA, plus I think the stress of the job was aggravating not just the hair but my life with my family as well. I'm beginning my search for wigs this week and scarves and hats...scary but I hope your Dr's prognosis is right in saying that the hair will grow back. Keep smiling.
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Comment by Jude on March 22, 2009 at 5:05pm
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Hi Paula
I'd be interested in reading that article by the Korean dermatologists. Do you have a reference? It does sound similar to what happened to me. My hair started falling out at age 30, the whole lot fell out rapidly in a month or so. I've never had any AA before. Then it started regrowing almost immediately it fell out. However new patches developed about 6 months after the regrowth started. Other bits have continued to fill in whilst new patches have developed. Some of these patches have started regrowing too. I've used a bit of regaine now and then but I don't think the regrowth had anything to do with that.
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Thanks I will have a look. Your post has given me a little bit of hope!!
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Comment by Karen on March 23, 2009 at 9:28pm
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hi there. I started lossing my hair (for the first time ever) in oct 08, patches and diffuse thinning and Jan 09 I finaly shaved the remaining 'bits' off. After shaving I noticed I had a bit of regrowth. Now here we are in March and I almost have full coverage again. I'm 37 so I could fit into the group that never get it again. I will wait and see as I have read that some people seem to loose their hair a second time around six months later.
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Comment by Jeff W on March 24, 2009 at 11:25pm
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Paula,
Thanks for sharing your story. I am also asian and had thick black hair... My story is very similar to yours as well. First spot seemed to come from nowhere and wasn't real big, but before I knew it hair was falling out everywhere. I've been dealing with this for about 3 months now. I had corticosteroid shots (didn't seem to help). I also have a prescription for Anthralin, but I'm not quite ready to go through the hassle and mess of that treatment yet (I don't want to add another irritant to my scalp at this point). I haven't lost all of my hair (yet) and I don't see any signs that my bald spots are regrowing either. I'm still losing more than what's left grows. Here's to hoping your Korean dermatologist studies are relevant for us and the regrowth phase will begin soon!
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Comment by SportyAusGirl on March 28, 2009 at 10:33pm
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HI Paula, do you mind sending me a message and eltting me know of the treatment you have been having? I'd like to try it. I wonder if it will work for AU. Please let me know, as i will go adn talk to my doctor about the treatments that you have had. thanks.
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Comment by Jessica on March 29, 2009 at 11:04pm
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Hey Paula, I read this post and I found that I have a lot things in common.
At first I also had about one spot on the back of my head. Then there was two or so, but I also started having a lot of diffuse hair loss all over my head.
I am also asian (chinese) and female, with no previous accounts of AA. However, i'm not in my 30s - I'm 16, so I'm not sure if I fit in the prognosis.
I really hope that it is acute, but I'm not holding my breath on this one.
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