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Permalink Reply by hagster on November 6, 2017 at 11:07pm

You will soon discover that AA treats all of us differently. Some people take years to lose their hair; others, like me, lose all the hair on their body in less than a month. Some manage their hair loss for years with shots, etc. and some of us just shave what little bit is left and move on. Some women love the freedom of a bald head, some wear pieces, some wear full wigs, and some wear scarves or caps as headcoverings.

Some are in the Jeljanz study and some are completely fine accepting no hair. Some worry about having no brows for looks; some about no lashes or nose hair to filter pollutants; some about no cilia in their ears as hearing loss can happen.

And, a lot of us seem to have thyroid disease or other autoimmune diseases.

My point is: there is no blueprint or timeline for what will happen. There is no cure. There is remission. You simply face each day as it comes, just like you do with anything else in your life. You arm yourself with knowledge about AA so you can figure out what to do and when to do it - even if its doing nothing.

You have taken the first step with seeking out a doc. Blood tests don't necessarily pinpoint AA, but they can rule out other maladies or diseases.

And, finally, please remember that you are a vibrant person - much more than just some hair.

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Permalink Reply by Cybergirl on March 21, 2019 at 3:58pm

I was reading your response and got tears in my eyes.  I am newly diagnosed (2 days ago) and have been struggling so much with this.  I am trying to keep everything in perspective because I know it could always be worse.  Your post touched me because I know there are other people out there who can understand what each of us is going through and we can find support in each other. 

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Permalink Reply by chris for hair on November 13, 2017 at 1:39pm

Try to keep in mind that there is a range of things that can be done, as the first answer said, the condition is different for everyone and just because it seems to be going fast now does not mean it will continue that way. Also, there are cases with one flareup, then regrowth and never another flair. One of my close friends had that happen. It has been year now and she never lost hair again. (She is over 70 now)

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Permalink Reply by Karaholly on November 19, 2017 at 1:16pm

hello! im' sorry you're going through this. i would suggest getting a punch biopsy from your dermatologist, this will let you know for sure if you have it or not, then they can start trying to help you. your doctor can start giving you steroid injections (they do not always help,) you can also look into squaraic acid treatment. with this your dr will burn the inside of your arm with squaraic acid. then your body  builds up antibodies to help fight that burn. you then get a lesser solution of the acid which you apply to your scalp areas. this does burn! a lot! but it does seem to slow down the hair loss, because your body will be focusing on fighting the burn rather than attacking your hair follicles. everyones AA is different, i dont know for sure, but your situation does sound like AA. my hair falls out in circular shapes anywhere from the size of a dime, to the size of my palm, and its random where its going to occur. luckily i do not have scarring alopecia, which makes it impossible for your hair to grow back because the follicles are destroyed, so my hair does come back. it will usually grow back after about 10 weeks after it falls out, then by then there is another group of bald spots. it totally sucks! i saw a specialist at UCI in southern california. she put me on xeljanz and after 3 months it is working! only problem is insurance does not approve it for AA yet... so my insurance has denied my coverage. this medicine is very expensive. 1200/month! i am going to appeal it, and also file for a hardship appeal with xelsource... i suggest you seeing your dermatologist, try and find one that specializes in hair loss. try and get on xeljanz (make sure you are healthy first!! it does have side affects.... although i have not had any, its a high risk medicatioin..) from there, try and get your insurance to cover it. appeal and appeal again, and ask your dr about the other options. i hope this helps. let me know if you have any questions! sorry this is happening to you, i know how hard it is =( good luck with this!! were getting closer to a real cure! stay strong!

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