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Permalink Reply by Molly on February 4, 2012 at 9:00pm

Thank you so much for the notes everyone. You're all so kind to offer your time and advice. Please know that it is truly appreciated.

UPDATE:
So, I had my fourth round of injections last week. I was somewhat alarmed when my Derm said she wasn't going to inject all the patches...sigh. I have a lot of them now. I also went to see a specialist at Strong Memorial Hospital in Rochester NY. She studies Alopecia and is considered an expert. I have no new treatments or advice to share...there's nothing to add to what we all know. That was "unsatisfying." She was not really into the vitamin/diet correlation. She was very clinical and kept referring to empirical data. I disagree, i believe there is a strong correlation to how our bodies react to what's put into them. After a thorough examination of my scalp, she was very positive. I have a lot of new growth, even though I'm still shedding. Bottom line, whatever I'm doing seems to be helping, for now. The two large original patches are filling in. I have several new patches on the back of my head, but, while they are still active, they seem to be responding to treatment. Between the injections, Rogaine, floucinonide, clobex shampoo, vitamins, fish oil, diet, exercise, and whatever else I'm doing, I'm growing hair back...We'll see how well it does or how long it lasts.

Here's my thoughts as to what triggered my auto-immune system to go into overdrive. First, last spring, after having replaced the windows in my house, we got a lot of mold in the attic due to lack of ventilation. We cleaned it with bleach and water (with all the windows open and fans on )and it was an awful job...I'm sure i breathed in mold, mildew, had a hacking cough, Got over it. However, end of August 2011 here in the Northeast, we got hit with Hurricane Irene. My husband's uncle's house was flooded with 13 feet of water and God know what filth. The next weekend, we went to help him clean up. The devastation was heartbreaking. I (and my family) spent a day in a very toxic environment. Mold, mildew, sewage, carcasses, decaying plants, and whatever else... I am coming to the thought that this doble exposure, with my asthma and allergies, kicked my auto-immune system into a fight, cause it was 7 to 10 days later that I noticed my hair falling out. Coincidence? Maybe. But the goal now, is to get my body back in line.

I have no answers. What works for one of us, may not necessarily work for another. I have to be thankful that my system did not choose to affect my joints, or teeth, or ligaments. At least there is no physical pain, I guess.

All you ladies (and gentlemen) who have reached out to me are so beautiful and well adjusted, that I know I can do this. If all my hair falls out, so be it. I'll get a wig or totally rock a Sinead O'Connor style, like you! I worry about my kids, if this is genetic and not environmental. But, they'll know what's happening at least. I feel much better physically being gluten-free. I'll stay on the elimination/anti-inflammatory diet. My stomach feels much better anyway, and I lost 10 lbs without trying! I run, and will focus on that. I will work to simplify my life. Not by cutting out what is required of me, but by simplifying how I go about it. I will buy fabulous earrings, and fun hats, and if my patches take over and there's nothing I can do, I'll shave it all off. But for right now, the hats work to cover the patches, so one day at a time, I'll just keep cleaning out the comb (with a few choice words) doing what I'm doing and hope for remission.

This site has been so reassuring and I cherish my new e-friends! I wish the best for US ALL, but that best comes from within, not from on top of our heads...or,..elsewhere.

Have a wonderful weekend everyone. Winter is almost over and spring is on the way. oooo! I wonder what the new hat styles will be! ;-)

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Permalink Reply by Plumeria on February 6, 2012 at 12:18am

http://emedicine.medscape.com/article/1069931-overview#a0104

This can be a complicated read - but this is what my dermatologist and I were discussing - we could take pills/injections that HIV/AIDS patients and some Cancer patients take to get their immune system to try to re-direct but the side effects are horrendous. The T-cells are the contributing factor to the hair loss. So, he says that research now knows what causes it, they need to work on a way to correct it without major side effects. I have been dealing with Alopecia for 32 years. When I first got it I was told I didn't know how to handle stress - I think that was the diagnosis for a lot of issues then - I am hoping, that during my lifetime, I will be able to see some changes in the medical field to help us all.

I was told it is not genetic - I was blessed with boys and when my first son was born, my husband shaved his head to be supportive of me. He prefers now being bald than having hair - he still encourages me to go without, but I don't like that bare feeling.......

You are right, the best of us comes from within........

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Permalink Reply by Christine on February 13, 2012 at 1:05am

Hi Molly, I agree with alot of what Kathryn had to say, and I feel I had some similarities for sure, my first experience with alopecia was within the first year of a complete hyst. I had some minor peri menopause symptoms prior to my surgery, but very mild, I do believe that the drastic hormone shift caused my AA, Its been several years now, and I still lose, gain lose, its a vicious condition there are times my hair has almost completely grown in, and then I will have a shedding time, and it will be bad for months, I constantly live with the unknowing, which is the hallmark of this condition.
It is so different for everyone, I will get my hopes up after reading that someone who has a similar pattern as mine (ophiasis) which is mainly the parameter of the hair, all around the head, they will have a remission that is lasting, and then I will read something about the pattern being persistent hard to treat, and having a poor outcome, so you have to just believe the best, and get through the rough patches. I do take Vit D3 4,000 units a day, I do feel that it did make a difference with my hair, I also use Minoxidil and feel it's helped me tremendously. As far as other supplements go, I take fish oil, flax seed oil, evening primrose oil (helps with eczema) I also have some asthma, which I only have to deal with when I get a virus, and maybe once during the year, I usually use a course of Pulmacort nebs, and albuterol, I also have taken singular seasonally. Hang in there, I know how tough this is, I'm going through a tough spot (pun intended) right now too. Hope things get better soon for you.
Christine:)PS I keep hearing conflicting things about herbal remedies that are suppose to modulate the immune system, sounds promising but then you will read something that says don't take because it can make autoimmune conditions worse, I started taking medicinal mushrooms, and cortycep sinensis and after I ran out (one month) I started shedding really bad after holding stready for a year. So difficult to know what to do.

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Permalink Reply by Kathryn on February 13, 2012 at 12:58pm

Molly, I am fascinated to read your "update." I think your exposure to mold is certainly a factor, not to mention the stress these episodes may have added to your life. In my situation, I started to wear a new uniform for work, and started loosing my hair (a few weeks?) shortly afterward. The same uniform caused a host of issues for many coworkers, ranging from skin rashes to respiratory issues. I'm curious if you've had your thyroid checked. In my case I believe my exposure to toxins in the uniform may have affected my thyroid, which also contributed to my alopecia.

I am also smiling at your list off treatments! I can relate to that! My approach has gone more on the naturopathic side, and it would take half a page to list all! But I am impressed with the positive attitude that you have in your approach. My hat is off to you! Keep us posted on your progress.

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Permalink Reply by Sweet K on February 17, 2012 at 1:58am

First of all, think positive... Optimistic thinking can allow you to conquer anything.. it's mind over matter.. try to buy u some "Carol's Daughter" hair product.. (amen oil, shampoo, smoothie).. they are a little expensive (do some research on where you can purchase). give yourself a smoothie every other nyte and sit with it on your head under a plastic cap and under a heating pad. this will stimulate your hair follicles and the blood on your scalp to produce hair..

also, take lyf how it comes.. God must really love us... this is how I think because I am TRULY lyk no other on earth.. i do special think to help me look gud.. wear full lace wigs, draw eyebros and wear make up.. i am a fashionista.. thus, I indulge myself in looking gud from head to toe.. i love clothes ... so I treat myself to buying myself clothes.. this takes attention of my hair..

this is a little help i hope for you...

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Permalink Reply by Karen Smith on February 23, 2012 at 8:26pm

This condition is really unpredictable. Try to live one day at a time and hopefully it will resolve itself.

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Permalink Reply by Melanie on March 2, 2012 at 11:33pm

Hi I can totally to relate to this as I am in a similar situation just waiting to see what happens. And as everyone says no one treatment suits everyone it really is a personal choice.

When I first realised I had AA in Dec 11 I went to see a dermatologist to confirm it, he started me with steriod injections - I had 2 sessions of these and decided it was not for me as I wanted a more natural path.

I have instead chosen TCM (Traditional Chinese Medicine) with accupuncture & also use REGRO(although I am quite slack with this using it only twice a week at the moment)
TCM is all about the Qi (energy & bloodflow)& what is going on inside your body. My TCM doctor found my Qi is blocked in my kidney & spleen (guess what both these organs supply the hair follicles)so it made more sense to me than steroids in my head.

Will it work? I don't know it's early days but I feel great and relaxed after each session so that is good enough for me. And the medicinal herbs given are okay once you get used to them.

I have also taken a few extra steps in my lifestyle to try to relax more:

1) Purchased an essential oil diffuser - I put lavender oil in this to get a good nights sleep

2) I put my worries(with the solutions if I have them)/to do lists in a book & close it before I go to bed so they are not still in my head. When I wake the next morning nothing is really that bad and I have clarity on everything that I need to do or rectify.

3) Take time out to meditate - it doesn't have to be full on just 10 minutes somewhere quiet, deep breathing and letting all your stress go. I usually put on some spa music and find I drift off quite easily

4) Non chemical shampoo with added essential oils - thyme, rosemary, lavender, and cedarwood are all good for AA

5) Chosen a few hats/wigs so I have them ready when the time comes. Plan C is to shave it all off.

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Permalink Reply by sharon on March 27, 2012 at 4:01pm

hi there i have alopecia areata for the last 3 months now,and i just wandered what the chinese medicine was called that you use.sharon

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Permalink Reply by Plumeria on March 2, 2012 at 11:46pm

www.ashleyrd.com

I was given this link today - I have inquired about their services and any correlation they are aware of alopecia and any other immunology diseases.

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Permalink Reply by thebaldface on April 16, 2012 at 11:55pm

since your hair is thinning, you'll probably be like me and get somewhere near areata and totalis.. with patches of hair left and about 20-30 large hairless craters in the hair..

i started shaving but the hair don't completely go away, and neither can i ever grow them back..
life is whole lot crappier..

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Permalink Reply by mmmm on May 22, 2012 at 9:59pm

Hi Molly.

I have started taking a chinese medicine called Ban Tu Wan about a month ago. After loosing most of my hair about one year ago, I cannot believe the amount of hair started growing in last month. I will defenitely recommend it.

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Permalink Reply by Starshine on August 24, 2012 at 1:58pm

Hi Miho. I am new to Aw and came across your post on Ban to wan. I just started taking it and was wondering if you had any success with it and if you still take it.

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