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Comment by Susan Innes on May 30, 2013 at 4:36pm

Wendy, I love the comment about the control issue. While the hair is coming in and falling out, we have good and disastrous days but once we decide to shave our heads, our hair is no longer controlling our emotional state; the chains are gone and we can proceed with our lives!

Comment by Kristy on May 30, 2013 at 3:05pm

Yep, I had crazy long think wavy curly hair as well...when I cut it to chin length I wanted to puke. I am so much happier hairless than I was with it all going. It sucks at times, but sometimes I wonder what I would do if it all came back. My girls see pics of me and are surprised that I had hair as they only remember me as bald. It took me a few years but I, too, have accepted it for what it is. I have so many other issues that hair is now on the bottom of the list. I would have paid anything to have it back when it was going. Now I'm not so sure. I really learned who my friends were when I went through this ordeal and it was life changing for me. I'd like to think that I'm a better person because of it. But when there is a cure I will be standing in line.

Comment by Wendy on May 30, 2013 at 1:50pm

AK, I was honestly scared shitless when I started to do it, but my hairline was so bizarre (although you could tell AT ALL when I wore a headband), that my husband even agrees that I look better bald then I did with such weird looking hair!
And I though that wearing a wig would be super uncomfortable, but I've been wearing hats and headbands for so long, that it doesn't really feel any different than that. And my kids (2 & 4) love rubbing my bald head :)

Comment by AK13 on May 30, 2013 at 1:46pm

Wendy thanks for sharing, my mom wonders if my last pregnancy (4th) triggered something. He is 2 so it seems to make sense. I chopped my hair too, super long and curly, to help with the shedding. Now I am losing triple that in the shower and throughout the day. It seemed to slow down a little bit for a few days, and I tricked myself into thinking maybe that was a good sign. You are extremely brave and I just hope I can get to that place.

Comment by Wendy on May 30, 2013 at 1:33pm

Hi all,
I just wanted to comment here as well...I am much like Kristy, I started losing my hair after the birth of my second child. That was back in Nov 2011 and it has slowly been falling out since. It started in this pattern, but more recently I started losing it at my hairline.
I went from having long, thick hair my whole life, to cutting it chin length (to reduce the amount of hair I was finding everywhere!), to last week shaving it all off. HOnestly, it was the best decision of could have made. I have never really gotten upset about my hairloss, bummed out for sure, but never really upset about it, until the night I decided to have it. But, once I made the decision and did it (after a couple tequila shots!), I felt instantly better...and back in control :)
I bought a great wig, that looks like my old, long thick hair and wear that most of the time when I am out around town. But, around the house or if I am working out I just wear a hat or go bald.
I feel truly blessed, because I have so many supportive friends and a very supportive husband. I do live in a small town though, so I have been answering a lot of questions this week about my sudden long hair! The weird thing is that I don't feel uncomfortable or awkward telling people about it. It feels good :)
I definitely have days where I feel like it is unfair that this has happened, but most days I just don't care. I know that in a couple months all the hair on my head will be gone and I have already lost all the hair on my arms, legs, my eyebrows....so, I have a feeling where this is heading! But, after a year of naturopaths, acupuncturists and special diets (I'm a nutritionist), I have finally just accepted that it is what it is.
Just wanted to share my story :)

Comment by AK13 on May 30, 2013 at 8:13am

I have read about it but it just sounds scary!! And when you stop will it all just fall out again or somewhere else :-( I stopped going to the dermatologist for now. I just don't know what she can do for me at this point.

Comment by Starshine on May 30, 2013 at 7:52am

Hi AK13. Have you heard anything about squaric acid treatments? My derm suggested it, especially for the back area, but it sounds so nasty. I have been on Methotrexate for several months now which seems to have stopped the hair fron falling out, but the back is really stubborn for regrowth.

Comment by AK13 on May 29, 2013 at 10:20pm

Looks like the spots by my ear and getting closet to meeting at the back. I actually was hopefully for a few days that I wasn't losing as much.

Comment by AK13 on May 20, 2013 at 10:57pm

Thanks for all the advice Kristy. The shots were working and I had a ton of growth and then I lost all the new growth, during the shots, she did another round but I have had no regrowth since it all fell out. I am willing to do more, but she didn't seem hopeful. That was why I was thinking about going to someone who specializes and has seen more cases. I love my dermatologist, but I don't think she has enough experience to even offer me other options. Thank you so much for all the advice, I have some phone cals and research to do tomorrow after my doctors appointment tomorrow.

Comment by Kristy on May 20, 2013 at 10:29pm

Hi Lexi, All of the pics are wigs except for the one that says Pre AA. It is black and white with wavy hair. I added a new one of me pre AA today with my hair straight. The doctor I saw when my hair first started falling out was one of the women's hair loss experts in Chicago at Rush, her name is Dr. Lady C. Dy. Horrible bedside manner. But the Prednisone she gave me worked initially (I got pregnant so couldn't take another round if I wanted to). She also checked Ferritin levels. The kenalog injections did not work for me, they just left me with dents all over my head (I did those after the prednisone). I also took Allegra as there was a study that showed it promoted growth in AA. I tried all of the topical stuff but I have sensitive skin and they tortured me. And I felt like the more stuff I had to do to my hair the more paranoid I was about it falling out and the more I would think about it. When I got pregnant in 2011 I stopped everything as I didn't want any of it to harm my baby, so I can't say that it would not help if you tried it. If your body can handle the steroids you could ask your doctor about that AK13. I went to Germany to try an experimental treatment, called exosomes, as they sometimes help others with other autoimmune issues such as Rheumatoid Arthritis. Nothing happened. I also have friends that have AU that comes and goes and the Anthracin (sp?) has helped them from time to time but I have never tried it. So there are some options that have a chance of helping, And yes, if your TSH is high, it may mean that you need Thyroid replacement. I have the lovely Hashimoto's thyroiditis autoimmune thyroid disease as well. Angela Christiano, a Phd, is at Columbia and she is one of the chief researchers on AA. I would imagine that she or her office staff could recommend a derm at Columbia that would be a good option for you AK13.

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