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Alopecia Areata Never Understood until it happened to me at 40
Comment by Belinda Johnston 2 minutes ago
I have been diag with alopecia areata for almost a year now in Jan 2011. I had long blonde hair down to the middle of my back with curls. A night in January went out to dinner and I was looking down at the menu my husband said, you have a small hole on top of your head? I immediately went to the restroom and started to move hair from one side to the other and noticed a pea size patch.I was blaming this Keratin treatment that I paid $450 for and fired my Hair Dresser. For weeks the hole was growing. At the end of February I decided to go see a dermatologists. He looked at it without doing a biopsy and injected kenalog all around the patch and told me to come back in a month. March came around patch is getting to the size of a nickel with NO signs of growth. I was starting to get UPSET. I had enough at this point in time to throw it to one side and clip a cute pin in and no one knew it except for my husband or if the wind was blowing hard that day I wore a Ball Cap. In March the same dermatologists injected 15 shots around the patch. April NO Growth you could place a half dollar in the bald spot on the top of my head and now not only am I losing hair at the sight, I was starting to lose hair all over my scalp. I really thought I was seeing a QUACK! I broke down for days because my hair was coming out in clumps at shampoo, it was in my car, pillows, on my clothes. Just strands after strands. At the time my heart just sunked to where I was really starting to worry. I decided to get a second opinion. My 2nd opinion Dermatlogists WOULD NOT SEE ME. She recommended that I go see a Doctor in Atlanta who specializes in HAIR LOSS this is pretty much all he does. In June I went to Dr. EDMOND GRIFFIN in Atlanta and he did a pull test and asked if I ever had a biopsy. I said NO! When he did the pull test, the hair was coming out at an alarming rate. He first, looked at the 2 bald patches now and said by looking at the 2 sights, he told me to take a deep breath, that this is only hair, and that I was finally at the right place. I looked at him and hugged his neck not only because I felt like I was at the right place but most of all he understood. I just sobbed like a baby while my husband is in the corner just feeling helpless. He walks out of the room brought a nurse back in and immediately did a biopsy, put me on 15 days of predinsone took all kinds of lab work to look for abnormal autoimmune disorder and told me to come back in 4 weeks.I took the prednisone and worried. I returned in July and he sat me down and said, Belinda, you have alopecia areata. You also have Telogen Effulium caused from worry and stress. He looked at me and said, First to make yourself feel better, let's cut your HAIR off to about 2 inch all around or go get a wig. The stress of it all is not helping thie situation. Then, we will go in and cut out all the bad cells from the kenalog that the 1st dermatologists injected (poorly) he went to deep with the cortizone. Once that heals then we will start treatment. I came out of there SICK to my stomach and vomited for 2 days. I called my TWIN SISTER who by the way looks just like me. She decides to go with me to look at wigs in Atlanta called New Horizones Great Place. I honestly freaked was freaking out. My heart was pounding at this point I have lost 75% of my hair it was time to make that BIG move I was looking unhealthy. I talked it over with my family and we decided to skip the wig and just go and get it cut off. I went to a new salon by word of mouth and sat in the chair went to a TOTAL different hairdresser and said CUT IT OFF. He put my hair in 3 different pony tails. Barely had ponytails at this point and just snipped them off. My sister Melinda came over and just gave me the BIGGEST HUG and cried with me. Looking back now I feel stupid for getting so emotional over losing hair. I believe honestly, this is all I knew. For 40 years I always had beautiful long locks and it became my security blanket. I never had it above my shoulders NEVER! Maybe when I was born LOL. I got up from my seat and he wanted to try and style it like, very edgy and I am a very classic kind of girl and EDGY was not what I wanted or needed that night I left. My first shower was so surreal. Went to grab my hair to wash and rinse it was not there.After I came home that night, I have a 5 and a 6 year old and when I walked through the door my children just STARED and my husband said Well, do you like it? I just laughed and said HELL NO I don't like it but it is what it is. First thing my 6 year old daughter said was "mom will it ever grow back"? I don't like it at all. First thing my son said, was "Mom you are beautiful either way. My heart was so happy at that moment it did NOT matter anymore. I did it. I made that big step. It was a HUGE step to me anyway. I must say it did relieve a lot of stress because I was worried about what I would look like, about my husband did not marry someone who's head was shaved down to 1 1/2 inch all the way around. I got questions am I sick, I got questions "why would you cut off you beautiful hair by people that I don't see very often. I went back to my next checkup at the end of August- They went in and injected the sights with numbing shots then dug out all the bad dead cells from the cortizone shots (kenalog) and stiched them up and told me to come back in 2 weeks. I came back in 2 weeks and they removed the stiches and the treatment BEGINS: 1st, they injected .1 kenalog (not so deep) It did not hurt at all around the 2 sights.(The first Derm hurt like HELL)Then he gave me some PROTOPIC Cream that I put on everynight at bad time and Rogaine for MEN. Yes it WORKS :). The next morning shampoo well with Aveda Scalp Therapy and apply OLUX-E foam all over the scalp. I do this faithfully everyday since August and I go in for my monthly scalp injections and here we are almost a year of HELL and my hair is GROWING now. I cannot believe it.I went to see my doctor today and we are going to STOP all treatment in January and see if I can fly solo. He feels that I will be just fine. We will see. I do hope this story does give someone HOPE at this Holiday TIme :)
Belinda Johnston
Replies to This Discussion
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Permalink Reply by Gail on
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Hooray that your treatments are working! I know the good results have greatly lifted your spirits, and what great timing for the holidays. It's a shame what you went through just to find out you had AA, and a shame about the first doctor who clearly was unfamiliar with the condition/proper treatment and had zero sympathy.
Many of us have been through similar treatment scenarios. A great many of us have done the prednisone, cortisone shots, Olux, Rogaine, DCP topical, light treatments, and so on.... all with varying results. What you will discover on this site is that everybody is affected differently by this disorder, and everyone does not respond to treatment in the same way. Some of us have had awesome regrowth and no recurrences and others have lost all their hair. It's very unpredictable.
I am very happy for you and keep my fingers crossed that your good results are permanent. I'm sure you look great in your "edgy" haircut, but I bet you'd like the old "do" back. Someday!
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Permalink Reply by Belinda Johnston on
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Did yours grow back?
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Yes and no. I had prolonged periods of good regrowth for years, and excellent response to treatment. 2008 & 2009 were very bad & stressful years for me and the hair loss accelerated faster than the regrowth could keep up,so I stopped treatment. I started wearing wigs in Fall of 09. Still do. I never lost ALL my hair, and have had areas of filling in, but my hair has not resumed its "normal self." That's not to say that your situation will be the same....remember - it's different for everyone.
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When you read a lot of these---Stress is a huge factor--You know I will deal with as it comes--I do feel that I am a better person having to go through this madness--I really hope it will return back to it's normal self--I read on the Rogaine bottle that you should continue to use your regrowth will fall out but Dr. Griffin states that everyone is different so I'm alittle nervous about letting the treatment go but you will not know until you try-
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I've heard that about Rogaine too. Are you using the 3% or 5% Rogaine? The box says women shouldn't use the men's Rogaine, but the results are better. You may develop hair growth on areas you don't want (how ironic) but it's not cave-man like, it's just fuzz. I guess it depends on where you apply it.
Don't be nervous, just wait and see what happens. Regroup afterward and go to Plan B if needed.
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Dr Griffin in Atlanta said Rogaine Foam 5% for Men and I have not had any other hair growths
anywhere else--Trust me I was worried when he said for "men" but honestly I was at the stage where I would almost try anything---It really works I did not notice a change until about 12 weeks of use---Bam there it was I'm still smiling because that was a GREAT DAY
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It is SO important to find the right doctor--It is also important that the injections don't go deep--The
prednisone was only for 2 weeks at the initial start--Rogaine FOAM 5% Men, Protopic ointment, Olux-E
Aveda Scalp Therapy Shampoo I do this everyday for the past 5 months---I have NEVER skipped a day or night
It usually takes 6 months and so far I am on target---I also had TE as well as AA so the TE is something that
is caused by worry and stress and you can lose up to 60% of your hair shedding at the root all over not in
patches--AA is only in circle patches I had 2 patches the size of half/dollars I have a picture where I could sit
the coin in the patch--It has been a long road--I am nervous by pulling away the treatment in January but I will not know until probably March 2011 if the hair will stay--My doctor seems to think so--He has many cases and
he also has been in the hairloss dermatology field for 30 years--When you find your doctor make sure you read
his credentials---I made that mistake with the first Derm--They will take anybody and give a shot at the sight send you on your way until next month--We are only a number to them--
BTW, I attached my doctor's link here below and maybe you can read what he does and when you call
to get an appointment where you live ask the important questions up front about what the doctor's
specialty is----Very important these days--My first Derm really messed me up not because she could not
get my hair to grow but the way the injections were injected improperly--
Write me anytime I will be glad to talk to you about my journey--- Where are you located?
I'm also a christian and believe me --After this experience it has really made me become a better person
and a believer for sure--I was before but now I look at things differently
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Permalink Reply by zeida on
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I had itching when it started falling out and then I started having pain on the scalp. Couldn't move what was left of my hair without pain. Now there is no itching and no pain. I don't know why. Everyone tells you something different. I am now getting shots and using both Rogaine and the cream my Derm gave me. I also take Biotin every morning. Not sure which of the above took the itching and the pain away or if it's a process your Alopecia goes through. I hope you find your answers. Merry Christmas to you. Zeida
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Zeida,
I also take BIOTIN 1000 mg and PRENATAL VITAMINS .....when I was having children
my hair and nails grew like crazy it made sense to me so I have been doing it everyday as
well--When I wean off the hair stuff in a couple of weeks I think I will still take Biotin and use my
AVEDA SCALP THERAPY SHAMPOO and find a good vitamin for my age--
MY AA patches completely bald, smooth like a baby's bottom and shiny for 7 months and my shedding all over at the root lasted 6 months--
TODAY my patches are FULL of hair and my hair is just like below maybe a tad shorter
http://static.becomegorgeous.com/img/arts/2010/Jul/21/2453/73412950...
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Patty,
http://www.aocd.org/skin/dermatologic_diseases/telogen_effluvium.html
Click on the link and it will explain TE ( Shedding all over at the root)
It states on the bottle if you stopped Rogaine you will lose the hair that grew unfortunately I don't know yet because I have to wean from it starting in 2 weeks. Time will tell
I do know that I did find that AVEDA SCALP THERAPY SHAMPOO will help with your itch
I was at a place back in January 2010 where my head would itch and very tender to touch almost like a burning sensation but not since then--But again I have been using the same shampoo now for almost a year everyday --
How long have you had your patch and how big is it?
Belinda
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I'm very happy at the moment and today is all we know tomorrow will be a another day hopefully
with hair growing not falling
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