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Permalink Reply by Dena on June 4, 2014 at 2:00am

Mink3... This is all so unpredictable. My daughter did injections for a year and had positive results. Then over a weekend lost probably 70% of her hair. We went back in and did a round of injections and it didn't seem to do anything. She continued to lose all her hair. I have a friend who has been having injections off and on for years and it seems to work great for her. I think that is the most frustrating thing about Alopecia is you never know what is going to happen so it is hard to prepare. Different treatments seem to work for different people. I wish I could give you a definite answer. After a year and a half of Alopecia Universalis we are noticing a few eyelashes again, so I am trying to not get to excited because I know it might only be temporary. I know how hard the not knowing can be. I hope you can find the treatment that works for you. Wishing you the best.

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Permalink Reply by Rose Marie' on June 4, 2014 at 2:11am

Hello Mink

Yes, for alopecia it is normal....sadly though nothing about alopecia feels normal and your normal may be someone else's abnormal.  It is an unpredictable, precocious condition that at this time has no known effective treatment or cure.  

You have come to the right place for support and knowledge though.  So welcome. 

Rosy

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Permalink Reply by mardy on June 6, 2014 at 9:43pm

many of us have had this majority of our lives.. I've had alopecia areata since I was about 9 I'm 45 now about 4 yrs ago it turned into alopecia universilas  so yes it's very unpredictable and I've had all the treatments and nothings worked I just accept what I'm given it gets very tiresome worrying all the time about wanting it to grow back... this is the best site to get all the support and info you'll need.. all some of us can do is share our stories but knowing what we go thru your not alone in this

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Permalink Reply by Mink3 on June 7, 2014 at 12:01am

Thank You for the reply's. It's been a long month, went back to the doctor today and got a lot more information on alopecia areata totalis. It helps to know I'm not alone. Now to fight with the insurance company that doesn't want to cover an appointments or treatments......any suggestions are welcome.

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Permalink Reply by Crazy Horse on June 13, 2014 at 10:05am

Hi Mink3:

I've had Alopecia since I was 8 1/2 years old. Alopecia Universalis is a very aggressive, unpredictable disease that is triggered by the body's immune system. There is no control over it and there is no cure. I read all about people conducting intensive holistic food programs, getting expensive injections, getting low-dose radiation, cortisone shots, etc., only to find out that their hair falls completely out again 3-6 months later. You cannot control it. I pray and pray for a cure. But right now there just isn't one.

I would love to join one of those Hair Clubs that put hair back on your head -- but what's going to happen? Will the hair all come out in a few months when the immune system goes after it?

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