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AA getting worse
Hello all,
I had my first occurrence of AA about 2 years ago. I ended up with a few spots then the thinning. Right when I thought if I lost any more hair it would be all gone it just stopped and all came back in just as normal. Then about 6 mos. or so I started with another large spot, since then I have had a ton more spots, and it is no thinning so much I barely have any left except for the top of my hair. The reason I am writing this is to say how frustrating it is how doctors treated this like it was nothing. Not one ever told me it could lead to total hair loss. My dermatologist just told me I must have had a traumatic event to have it start. Almost like it was normal and never discussed anything else. This whole time I thought the thinning was ABNORMAL. I thought there must be something else really wrong with me. This site has opened my eyes to all of the diffrent types of Alopcia. I am so thankful for everyone on here that shares their questions and experiences.
I am having an extremely hard time watching the hair come out in my hands. I dread showering and washing my hair. Sometimes I just rinse just to avoid it. Again, I had no idea this was normal. Thank you to everyone on here for all of the support.
Replies to This Discussion
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Permalink Reply by Suzie on
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I'm so sorry this is happening to you. Do you have another autoimmune disease? What kind of treatment did you take when you first had the alopecia?
When I first had hair loss st 15 my dr had no idea what it was (35 yrs ago). Developed RA after my son at age 26 and after trying Orencia I am now experiencing alopecia again. Thinned out a lot and lots and lots of patches. I have since stopped the Orencia. Didn't like my dermatologist cause she kept down playing it and eventually said there is no more she can do for me which was give me steroid injections and steroid cream. I take lots of supplements and am going to the Mayo clinic next month to see what my options are (I.e. Xeljanzn or something else)
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Permalink Reply by Pamela0415 on
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I'm so sorry to hear that. I also have AA and it all started back in April 2016 after a break up. It is hard for me to believe that it's triggered by a traumatic event which seems to be the only explanation given by doctors. I've been having steroid shots and the hair is growing back but I have noticed a dent on my scalp which worries me a lot. However I noticed that I lose a lot of hair while in the shower, I'm almost scared to wash and brush it. My friends that do not have AA said it's normal to lose hair but I wonder if my AA is getting worse. When I first noticed the bold spot back in May 2016 it was the size of a nickel, i went to the doctor right away and thought i would get it under control. Then by end of June it was the size of a quarter.
What caused this to reoccur? you mentioned 6 months ago you started having spots? did you have another stressful moment?
I understand your concerns. The worst part is that you end up more worried after noticing your hair falling off.
keep in touch
Pam
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Pam, all I can tell you is that I first started alopecia areata in high school. I'm sure I had the normal stress of being a teenager. After 6 months or so, it grew back on it's own. I did not see a dermatologist, just my primary care doctor. At the time I did not have RA. According to a youtube video I saw of a Dr. Brown, there were studies that have shown if you have alopecia areata as a child/teenager, you will develop another autoimmune disease at some point in your life.....for me that was true. I developed RA at the age of 26. I have a lot of stressful moments...especially because I own my own business (typesetting and design) and the pressure of meeting deadlines/designs can be overwhelming and I have not had a problem with AA since high school. I was able to raise 3 kids and own my own business (talk about stressful). I do remember occasionally my hairdresser would tell me I had a small bald spot on the back of my head and I wouldn't even worry about it because it never grew any larger and it was covered up.
2 years ago I began taking Orencia for my RA and shortly afterward my hair started falling out and I began having AA patches. I blame the Orencia, although my rheumatologist says "no"....I say, it's possible because I took Enbrel, Humira and never had this issue.
I have more spots today and I did 2 years ago and it has thinned out quite a bit. I am scared that I won't be able to cover up my spots too much longer.
The dent on your scalp is from the steroid injections. I also had the dents and they eventually went away. The injections helped at first for me, but then it just stopped working. I keep taking supplements as well (biotin, hair vitamins, etc.). I am convinced that the hair I still have is stronger from all of the supplements. (maybe it's just mind over matter). I am going to the Mayor Clinic at the end of the month and see that their dermatologist and rheumatologist recommend.
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