Comment by Tallgirl on November 6, 2014 at 9:36am

Not necessarily. I didn't.

Comment by Rose on November 6, 2014 at 1:26pm

Hi - did you try Xeljanz too or did you just have regrowth naturally after losing it all and vellus is all you've got ? Do tell...

Comment by Tallgirl on November 7, 2014 at 1:42am

No Xeljanx. I had UV, tar shampoo, shots in the head, cortisone, prednisone 1963-1972. Then, after hair growth 1972-1990s, birth control pills seemingly caused hair loss again, going to AT and AU. Tried the shots and the Dritho cream, then gave up on it all by 2000. Now, at age 62, I just have white hair circling a bald dome. Regular brunette hair came back on most of body and face, but is sparse on arms and legs. I wear wigs, hats, scarves in public, and nothing on head (at home) when it is warm. After 51 years of this, I just accept it and move on.

Comment by Rose on November 7, 2014 at 2:00pm

It is truly a nightmare though !! I am 52 yrs old and this happened to me for the 1st time ever when I turned 50 years old ! It was fast and furious too, like some one dropped a bomb on me and my hair melted off. Alopecia Universalis is like taking an "ugly" pill, the ultimute "buzz kill" for my marriage and is terrible for my 11 year old son who is now isolated more because his mama doesn't want to be seen in public. Not to mention he is autistic which has caused me great pain and phyical exhaustion. I am really hoping this "Xeljanz" is a cure and can get ALL of us out of this misery.

Comment by Tallgirl on November 8, 2014 at 2:40pm

   http://www.naaf.org/site/R?i=fc4pFgONG-jwA2OwS8WlIw

Comment by Rose Marie' on November 9, 2014 at 6:15pm

Hi

My daughter has had natural remission on and off for the last 11 years.  (no drugs )  When her hair came back this way it will always start as vellus hair and then terminate in patches (she has had varying percentages of regrowth from 97% to 70%).

She has recently been diagnosed with another auto immune condition.  (Crohn's disease).  She was put on very high dosages of prednisone (very unpleasant drug)...and yes she had regrowth because of it, but never like when she went into a natural remission.  She is now on an immunosuppressant..to keep (hopefully) her Crohn's under control.  She has no hair even though on this drug.  These type of drugs are not a great choice if you don't have to take them, there really are some horrendous side effects (and I know that people are watched closely) as my daughter is...but if I had the choice and my daughter had the choice she would not be taking them.

Rosy 

Comment by Rose on November 10, 2014 at 6:21am

Hi - thanks for the info. I will see what happens with the Xeljanz and hope the Vellus hairs take a turn. I don't plan on taking this drug long term so hopefully not much damage is done. If it works, I imagine just a low dose daily would thwart any further attacks...

Comment by Starshine on May 4, 2015 at 2:14pm

Hi Rose, just wondering if you are still taking Zeljanz and if you had any more growth.  I am two months on Zeljanz, but have not had the amazing results other people are having....yet.  I do have some vellus on head, but is about it.   

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