Dear all,

For those who became universalis what was the process, was it losing head hair first then brows then lashes? I seem to read this is the most common case. But I have been losing lashes first then brows faster.. Also how long did it take since the first spot to become total universalis? is it years days months?

Thank you

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My scalp hair started to go first. Started loosing it in handfuls winter of 2016. I still had some brow hair when I finally shaved my scalp. Lashes were last to go. I think it is different for each individual. I developed Alopecia areata in my 40’s. Struggled with that for almost 20 years. Didn’t finally shave my scalp until spring of 2017. Like I said, brow hair disappeared then lashes. 

For me, it started on the scalp, but then quickly spread to brows and lashes then body hair, with everything gone within 6 weeks from the first hair loss. I think it can be very different from one person to the next.

Very similar to my experience, Anna.  However, I first noticed diffuse alopecia at age 60.  Then it became advanced at age 65, and within about 2 months everything was gone, exactly in the order that you described.  Funny, because my alopecia areata first started at age 24 (one patch), and every 5 or 6 years after that I would get a single patch.  I never needed any medication, and the hair started growing back after 3 or 4 months (perfectly normal color. and texture when it did).  I am really curious to know what caused all h*ll to break loose when I hit 60.  I am now 71 and still alopecia universalis.

I would be very curious on medications. I have had mine reverse with nutrition changes and removing medications from my life.

The only medication that I am on is Zoloft, and I started taking that at age 42.  I have been on it consistently since then and am on it still.  I saw some posts about nutritional changes that you implemented.  Can you direct me to them.  For what it's worth, I stopped drinking red wine or any alcoholic beverage at all about 3 weeks ago, wondering how they might. help.  Funny, but my alopecia really took off after I stopped smoking in my late 50s.

So interesting Sabine - I went AU at age 48 (at menopause exactly) after having had two episodes of one AA patch, once at age 17 and once at age 27. Both grew back the same way yours did, with no intervention. And no other episodes at all until I went AU all of a sudden.

I have had full regrowth now after 12 months on Jakavi (ruxolitinib) which is great, though the medications' side effects are NOT great.

What were the side effects, Anna?  I also always wondered if my AU was triggered by menopause (I had my last period at age 54).  However, I never had any side effects from menopause whatsoever--no hot flashes, no night sweats--absolutely nothing. except a gradual cessation of menstrual periods.  I always wondered if possibly my estrogen levels were still high enough to avoid those side effects, and then when I hit age 60, there was a sudden, sharp drop in my hormones due to menopause.  Always wondering that.

I am convinced that menopause triggered the AU - it's too coincidental not to have. Apart from the AU, I did have some hot flashes and night sweats, but that's it. I am on HRT as I reasoned that it might help rebalance my hormones to help my hair come back. It did not... but I am afraid to go off them now in case that makes the Jakavi less effective somehow.

Jakavi side effects are high cholesterol (never ever had it before, it's totally medication related, but I have to take a statin for it), constant fatigue, and pretty significant weight gain, which is utterly depressing as it does not shift at all.

So far, having hair outweighs those side effects for me, but I am impatient for another option to be available to us as a treatment, one that is less invasive to the system.



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