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My Undiagnosed Mystery Hair Loss Story. Aa? Who Knows...

Discussion in 'Tell Your Story' started by ongster, Jul 8, 2016.

  1. ongster

    ongster New Member My Regimen

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    Hello All,

    I figured I would share my story with you to see if anyone else has had the same problem as me. It started mid June 2015 I was at work and noticed, while looking in the mirror, that my hair had gotten quite thin on the top. My hair at the time was EXTREMELY THICK the month before. My hair had always been thick. It was something I got from my father. My dad is currently 60 and has a full head of thick luscious black hair. My grandfather even passed away with a full head of hair. So I really didn't think I had male pattern baldness.

    I normally kept my hair at about 4-5 inches long on top with an undercut and did a side part. I used to blow dry my hair into place, style with wax, and then spray it all down with hair spray. After noticing the thinning i decided maybe I was abusing my hair with all the heat and harsh chemicals. I decided to stop using any type of hair product until my hair got better. I went to get a haircut that same week to get my usual trim. My hairdresser in the middle of cutting my hair stopped to tell me i had patches on the right side of my head. I blew it off and thought it was just some weird cycle my hair was going through. As i was taking a shower a few days later about 30-40 hairs fell into the tub and ran into the drain. It progressively got worse and worse day by day. Some days I'd be sitting in class and hair would just fall onto my desk. My right temple looked like it was starting to recede, so I figured that I somehow had an aggressive form of male pattern baldness. I ran to my primary care doctor and told him what had happened. He pulled at about 6 areas of my head and within each of those pinches, he had about 6-7 strands of hairs between his fingers. He didn't think much of it and told me to take biotin, so I did just that, but the hair continued to fall rapidly and I feared I'd be bald within the next month. My hair had fallen out in a diffuse pattern all over my head but way more on the crown.

    I made an appointment with my dermatologists who decided to run a blood test, which came back completely normal. No hormone imbalance, no vitamin deficiencies, no thyroid problems, absolutely nothing wrong! She then decided to do a scalp biopsy and when the results came back it stated that I was likely experiencing a recovery phase of Alopecia areata. The Biopsy report states "Vertical sections demonstrate terminal hair follicles with one vellus follicle and several fibrous streamers without peribulbar inflammation or inflammation within the streamers. Focal melanin is noted within a dermal papilla" . I had no distinct patches of hair loss. The patches on my head still had hair and were not completely bald. They also didn't have hard edges so they weren't very apparent unless you were really looking for them. My doctor said what I had was probably a rare form of AA called Alopecia Areata incognita. She prescribed me clobetasol topical drops to apply twice a day while also taking prednisone 20 mg once daily.

    After one month had passed my hair loss had almost completely come to a halt. Couple of more months down the road, the hair that had fallen out has failed to regrow. My right temple region still remains the way it was, the top of my head is still thin and i still have tiny patches through out my whole head. I went back to my derm and she decided to try giving me steroid shots on the crown only to see if it would have a good response. That didn't work. She decided that after that there was nothing else to be done and didn't want to keep giving me meds if i wasn't responding.

    I decided to go to a different dermatologist. At this point its May 2016 i shared with her everything I had taken, my biopsy results, blood tests, everything. She performs another biopsy and this time the report states

    "Features are those of a non scarring alopecia. Despite the absence of a peribulbar infiltrate, a phase of AA is in the differential diagnosis. The other possibility includes Androgenetic Alopecia with a superimposed component of Telogen Effluvium. There is no evidence of dermatophytosis."

    My second dermatologist wants me to go on Xeljanz to see if I respond. If I do we can eliminate the telogen effluvium and male pattern baldness. I'm taking 5mg twice daily. If I do, I guess we'll know what I'm up against. I've only been on xeljanz for almost week but I will keep you guys posted! If I dont respond I really dont know what to do....

    Thank You,

    - N

    Here are some photos of my hair before and after the hair loss:
     

    Attached Files:

    DerDon likes this.
  2. Roberto_72

    Moderator

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    Difficult to say when even the lab test and interpretations of lab tests were incoherent.

    In my opinion, if it were MBP, it would be a little too fast: the difference between before and after seems excessive to me for just a year of male pattern baldness +Telogen Effluvium.
     
  3. dralex

    dralex Senior Member My Regimen

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    What age were you in the before photo and the after photos? What age were you when it first started? Did you have any sores/itching/scarring?
     
  4. dralex

    dralex Senior Member My Regimen

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    And how would using Xeljanz eliminate male pattern baldness and Telogen Effluvium?
     
  5. lickawrist

    lickawrist Established Member

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    could be the flash and short hair. my hair looks a lot thinner and defuse when buzzed even to a 3, but it looks more thick and lush with longer hair.
    it is a jak inhibitor; i think there was some claims in nominal success as a treatment for Androgenetic Alopecia and aa. i dont know much about it.
     
  6. ongster

    ongster New Member My Regimen

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    I was 24 in the before photos and 25 in the after photos. There was some itching but no sores and theres no visible scarring. The biopsy report said it was a non scarring hair loss.
     
  7. ongster

    ongster New Member My Regimen

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    It wouldn't eliminate it it would just help eliminate the other possible diagnosis's. If i responded to the xeljanz then I would more than like;y be suffering from some rare form of AA
     
  8. ongster

    ongster New Member My Regimen

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    Hi all! Decided to leave an update for you guys since it’s been a while. I took xeljanz for a little more than a week and got horribly sick. Lost my appetite and could hardly keep any food down. I decided to stop taking it all together as I feared it was doing more harm than good.

    A few months after this i had noticed small patches of facial hair missing. I’m clean shaven and can barely grow facial hair (I’m Asian) but you could still see the small patches in the stubble. Then I noticed the same down there...

    About 3 months ago went to a third dermatologists to get another opinion and mentioned all the new hair loss I was having now on my body. She said she had heard of a clinical study that showed that Allegra the allergy medicine had shown results in AA patients so she prescribed me that for a month. It didn’t work...she then told me she didn’t believe I had alopecia areata and I was likely experiencing male pattern baldness. She blew it off and decided to no longer treat me. That’s where I am now, nearly 3 years after the initial hair loss. I’ve decided to try one more doctor who happens to be double board certified in dermatology and dermatopathology to get a final opinion. Wish me luck.
     
    sharparrow85 likes this.
  9. sharparrow85

    sharparrow85 New Member

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    Keep us posted! Curious what the new derm has to say about the hairloss. I find it strange that the last derm thought you had male pattern baldness when you were having patchy spots in other parts of your body too...
     
  10. Inkymalinky

    Inkymalinky New Member My Regimen

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    Ongster, do you have an update to your story? I know it’s been over a year since you last posted. Really eager to hear your outcome.
     

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