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Diana, Age 37, Alopecia Areata (or Traction). Depends On Who You Ask.

Discussion in 'Tell Your Story' started by DianaG, Jul 13, 2017.

  1. DianaG

    DianaG New Member

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    I'm not sure what I have anymore. I'm told so many different things and I'm tired of all the tests.
    I started losing my hair at 13 years old. I am now 37 with hair loss on both temples and the spot spreading toward the center. I don't know how much longer before I lose all my hair from the front of my head. I've gone to so many doctors that I've lost count. As a kid, I was told it was traction alopecia. I was prescribed shampoos and ointments and told to stop pulling at my hair and cut it short. When that didn't work, I was told Rogaine and there was nothing else they could do. This is how it's gone my entire life. When the dermatologist told me to try Rogaine, I knew they had given up.
    My hair loss was left untreated until I reached adulthood. I got a job and found out that insurance companies covered Alopecia. (As a kid, it wasn't).

    Now as an adult, I've heard different diagnoses. I spent many years with the diagnosis of Alopecia Areata. I've had many biopsies. I've tried the cortisone shots to the point were my dermatologist was worried about the scarring, so she sent for a biopsy. Again diagnosis of Areata. She continued shots, but told me to start Rogaine. I was with this dermatologist for over two years. Then came my change in insurance and I was transferred to another dermatologist.
    Dermatologist B continued the shots. I was with her for a couple of years before she requested another biopsy to "update the records". With that came the change to using squaric acid. I used the squaric acid for over a year. During both these treatments with no improvement. Dermatologist B seemed nice and she always talked about other things I could use, but I kept chugging along with the squaric acid. She insisted there was hair growing, but I was losing to many more to really see the joy in the that.

    Then came a transfer to yet another dermatologist. Dermatologist C. I rarely met with her (and on file she is still my dermatologist) and continued to receive my squaric acid. By this time it was over a year of using squaric acid, and then the dreaded thing happens, my scalp stopped responding to it. Biopsy again; in which the diagnosis changed to Traction Alopecia. She said shots and squaric acid (and another treatment that I called "the purple nightmare") wouldn't work with inflammation of the scalp. The final words that broke my heart were "Try Rogaine". When she said this, I knew she had given up.
    In April of this year, I contacted her for recommendations for a hair transplant specialist. I had an initial consultation in May where they sent my back to my dermatologist to get specific sites biopsied in order to rule out lupus. It wasn't until July when I was finally able to get back to see the transplant doctor. My dermatologist holds to her diagnosis of traction alopexia, while my hair special says it's Areata. Lupus was ruled out; (although my dermatologist thinks I have a form of discoid lupus on my skin.?). Again, no definitive answers.

    I've received a quote for hair transplants, but I'm scared. I'm scared of the pain, shock loss and the possibility that it won't work. I don't know what to do anymore. I found another spot today. I was so upset, I went and had my hair cut to my shoulders. I've been using Nioxin, but I think I'm going to stop. My hair still falls out, and it's gotten really dry now (I think due to the shampoo). I'm so depressed and my husband doesn't understand.

    If you made it through the end of this. Thank you.
    I know this post doesn't say much about me, but I just needed to get this off my chest.
     
  2. Joann

    Joann Moderator

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    Welcome to Her Alopecia Diana. I'm sorry to hear about your hairloss. My own started as a child of 4 & was from Alopecia Areata. I did have remissions from it and my hair was the best during the period of time I had my 3 children. It flared in my early 40's again and I did the injections , topical treatments, and finally a treatment very much like squaric acid.

    If it is Alopecia Areata you should know that the treatments available at this time work at regrowing the hair that has been lost. In Alopecia Areata it is the immune system's white blood cells that mistakenly attacks the hair follicles treating them as though they were foreign to your body. At this time there is no cure that stops this attack. Often the immune system goes into a spontaneous remission. If that doesn't happen even the hair that has regrown with treatments is at risk of falling out again.

    I didn't know that for many years until I joined Alopecia Areata support groups.. I generally had regrowth & spontaneous remission after each bout of Alopecia Areata so I mistakenly thought
    the treatments cured the Alopecia Areata. You can imagine my dismay to find out this wasn't the case.

    If you definitely have Alopecia Areata it would not be advisable to go for a hair transplant. You could lose that hair if the Alopecia Areata is active.

    I wish I could give you more positive news about Alopecia Areata . It's so frustrating because
    the outcome is unknown. There is a lot of research being done now to find a cure. There are clinical trials with a drug used to treat Arthritis that seems to also have the effect of growing hair.

    It took me most of my lifetime to make my peace with hair that grew & fell out.
    Finding support & sharing & helping others going through the same experience these past 15 years have brought me to accept my loss.

    I would be glad to help you with any other concerns or questions you have.

    Hugs,
    Joann
     
  3. hair of the dog

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    Hi Diana
    Have you tried nizoral shampoo or another 1% Ketoconazole (KEE-toe-KON-a-zole) -based shampoo)?

    Apparently it is mandatory for the success of any hair loss treatment regimen. Nizoral calms the inflammation associated with hormone changes.
     

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