Alopecia Universalis Advice

Hey everyone,

This is my first post, as I’m new to this site. I joined because I wanted to reach out to see if there’s anyone to talk to about this. Here’s my story:

I’m currently 27 years old and a little over two years ago I started losing hair. Prior to it starting, I had medium length hair, and it was very healthy. Same goes for my beard, which was a moderate 2-3 inches long. I randomly discovered a bald spot in my beard, and I tried everything to get the hair to grow back, but I couldn’t stop it. I thought it was thinning because of me unconsciously messing with that spot, but it wasn’t. So I shaved my beard because I couldn’t hide the spot anymore. But after shaving I realized I didn’t like the long hair with no facial hair, so I got a haircut - and that’s when I discovered the other spots. A handful of bald spots on my scalp indicative of alopecia. I went to a dermatologist, which at that time it had gotten worse, and he took one look at me and said I had alopecia areata. He gave me a couple of steroid shots that were supposed to calm my nervous system down, however it seemed to exacerbate it. Over the next year and a half, it slowly took every hair on my scalp and face, then my eyebrows and eyelashes, then finally all my body hair. I’ve been to a few other doctors since, and after numerous testing, along with a negative ANA test, I’m still at a loss. One dermatologist was able to get me on Olumiant, however I couldn’t afford to stay on it, even though I thought I’d seen some results. 

My reason for making this post and sharing my story is this: is there anyone else out there who’s story is similar to mine, or even if you were born with it, do you still have little hairs all over your body? It’s the weirdest thing for me, but even with my diagnosis, I can still see little sporadic hairs on my body, however they are very fine and can pull out easily. Is this normal? No doctor I’ve been to has been able to provide any information about this, they just say “Oh, well. Bye”. Any feedback would be great. 

Thanks everyone!

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Permalink Reply by Craig on September 13, 2023 at 11:12am

My story is almost exactly like yours. I'm 46 now, but when I was 25, I had little round spots on my head that I would get treated with steroids shots. It worked for about a year, then the spots kept getting bigger and bigger until I had no hair. Then the eyelashes and eyebrows went. I still have a little facial hair though and under arms and pubic region. I know how depressing this condition can be. After it started turning into universalis, I got desperate and tried every drug they would prescribe me. Some of those caused even more depression and none really worked. After awhile (time is different for everyone) you just accept it as part of your life and you will stop thinking about it as much. I never even did any reading or research on Alopecia for the past 15 years, but have heard there a few new drugs out that show promise with mild side effects. Thinking about trying it out. Have you heard of or tried Olumiant or CTP-543?

Permalink Reply by Craig on September 13, 2023 at 11:14am

Also, over the course of the past 20 years, I have had a tiny amount of regrowth, but the hairs were super thin and lacked pigment. the regrowth was always on my eyelashes and eyebrows. 

Permalink Reply by SabineTawni on September 18, 2023 at 10:25am
You state in your post that you were unable to stay on Olumiant because you could not afford it. Why are insurance companies refusing to pay for this? They pay for drugs for eczema, psoriasis, and other autoimmune disease, so why not this one? I just read an article about the first woman with alopecia universalis posing for the cover of a sport magazine. I must confess to having mixed feelings about this. Trying to "normalize" our condition actually ends up hurting us! We have enough problems with healthcare providers and insurance companies dismissing us and/or denying coverage for treatment. So, PLEASE, let's not give them another excuse to ignore us! We have a real, authentic disease that has been recognized in medical journals for decades now. For the first time ever, we are seeing some new drugs to treat it. So again, I resent some people with this disease trying to treat it as though it is just some flavor-of-the-month fashion statement. Perhaps, people with alopecia areata should be with an immunologist rather than a dermatologist.
Permalink Reply by SabineTawni on September 18, 2023 at 10:25am
You state in your post that you were unable to stay on Olumiant because you could not afford it. Why are insurance companies refusing to pay for this? They pay for drugs for eczema, psoriasis, and other autoimmune disease, so why not this one? I just read an article about the first woman with alopecia universalis posing for the cover of a sport magazine. I must confess to having mixed feelings about this. Trying to "normalize" our condition actually ends up hurting us! We have enough problems with healthcare providers and insurance companies dismissing us and/or denying coverage for treatment. So, PLEASE, let's not give them another excuse to ignore us! We have a real, authentic disease that has been recognized in medical journals for decades now. For the first time ever, we are seeing some new drugs to treat it. So again, I resent some people with this disease trying to treat it as though it is just some flavor-of-the-month fashion statement. Perhaps, people with alopecia areata should be with an immunologist rather than a dermatologist.
Permalink Reply by Denise on September 20, 2023 at 8:22pm

"he took one look at me and said I had alopecia areata" - same thing happened to me, then she wanted to do injections, oral, and tropical treatment.

I opt'd out of injections/oral because many others stated insurance may or may not pay and also the side affects i didn't want to gamble with.

I was March 2023 diagnosed with AA by dermatologist instantly - i requested a biopsy which then stated i have AT (scalp only) but physically i have AU.  I've asked others with alopecia should i get tested again and said no because there was no point especially if i can see it.

All my hair was gone by June of 2023 - til this day i'm still trying to figure out why.  I wish i could say i've had it for a while because i think it might be easier mentally but i have my days.

Permalink Reply by Jim In Cali on September 28, 2023 at 12:34pm

For 10 years I had the same exact thing happen to me. I first spotted a small "circle crop" that tiny aliens carved in my head. Those perfect circles are tale tell signs of alopecia. Way before this my legs and arms started losing hair. Steroid shots help sometimes with regrowth but like you it was fine, easily fell out. Would pat dry my head after showers.. Other times my alopecia said I'm in charge. Last time I was pretty much bald for a year with nothing working. Here the first time going bald (pic). For the last 2 years I've been on a Clinical trial of Concert JAK inhibitor. Results were have been amazing. Took about a year to fully work, it continues to fill in. Now my hair thickness, and strength are like in my 20's. Last pic is from 9/1/23. Been a long time since I could let my hair grow long, and it turned sunbleached blonde, which was normal in my youth. Every summer this would happen. 

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Permalink Reply by Jim In Cali on September 28, 2023 at 12:45pm

Concert Deuruxolitinib Alopecia JAK1&2 inhibitor treatment is expected to be approved soon. My dermatologist said 2 other similar drugs are approved when I go off the study. FDA delayed approval after 1 patient developed a blood clot at the higher dose. 

Permalink Reply by SabineTawni on September 29, 2023 at 10:59pm
Thanks for posting the photos, Jim. You look amazing!
Permalink Reply by Apple on January 9, 2024 at 11:56pm

There is treatment my friend, JaK inhibitors we don't need to suffer. Find another dermatologist. I research like crazy and my dermatologist is UCSF provider he knows and gets all the experimental and new drugs for alopecia. I use Xeljanz it grew all my hair back, it works but its a life long tx that you never stop. The new med out is litfulo, there's also oluimant, there's treatment for children because it is hereditary as autoimmune disorders are. I am hardly on here I must say, but I did find solace in being able to discuss this with people who get it. I hate talking about my problems to people, I know I hate hearing about peoples problems esp because you can't help them. We can together help each other here, because we have the same issues and they are real, they are valid, and they effect us tremendously. A woman without hair just doesn't look normal, such silly thing to say but the norm is hair. I just want to look normal. It doesn't define me but my hair is part of me.

                                                                                                             

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