Dismiss Notice
Welcome! Please read this announcement regarding the new Forums: Click Here"

A year has passed but I'm still new :)

Discussion in 'Newly Diagnosed Alopecians' started by Lou, May 5, 2014.

  1. Lou

    Lou Guest

    I have been dealing with Alopecia Areata for a year now and it just keeps falling out. Mainly nape and behind my ears. I wear my hair up at work with a hairnet (glamorous look) but now have resorted to a braid to hide the huge nape patch. Tried cortisone shots, probiotic ointment and now the derm wants to try squaric acid. I'll give it a shot but nothing has seemed to make a difference yet. My hair is long and hides it well when I wear it down. Just brushing normally I'm still loosing lots of hair. Had my thyroid checked too. Nothing too off there so far. My mom was hyper thyroid and my dad hypo. Here I thought all I had to beat was getting sleepy and fat or becoming a butterfly! I have not given in yet.....
     
  2. Lily

    Lily Senior Member

    Joined:
    Mar 26, 2005
    Messages:
    2,763
    Likes Received:
    11
    Dislikes Received:
    0
    Welcome to the board. I do not have Alopecia Areata but I know what a long journey this is. I now wear a clip-on topper.
     
  3. Joann

    Joann Moderator

    Joined:
    Mar 25, 2005
    Messages:
    2,399
    Likes Received:
    16
    Dislikes Received:
    0
    Welcome to Her Alopecia Lou :grouphug: I'm sorry to hear that you have been dealing with Alopecia Areata hairloss for a year now . The areas where your loss is can be stubborn to treat successfully. It is referred to as the ophiasis pattern which spares the crown and affects the sides and nape.

    All the treatments available at the present time for Alopecia Areata work at regrowing the hair that has been lost in hopes that the immune system goes into spontaneous remission and the hair can continue to grow. There is no cure available at this time that can do that though researchers are working on it.

    I've been supporting those with Alopecia Areata hairloss for 10 years now and there's definitely more room for hope than despair. Personally I have had years when my Alopecia Areata was in remission which beats the odds of a poor outcome for a 4 yr. child who had Alopecia Areata as severe as I did.

    It is a difficult and life altering experience to go through and I hope it is some measure of comfort to you to know you're not alone. This conditions affects men, women and children of all ages and races all over the world.

    I look forward to getting to know you better.:) Please feel free to share and ask any questions you have.

    Hugs,
    Joann
     
  4. dancer

    dancer Experienced Member

    Joined:
    Oct 7, 2011
    Messages:
    867
    Likes Received:
    6
    Dislikes Received:
    0
    Hi and welcome

    Sorry you been struggling with your Alopecia Areata, I hope you find the forum helpful :)
     
  5. LoosingItAll

    LoosingItAll Established Member

    Joined:
    Apr 21, 2014
    Messages:
    282
    Likes Received:
    3
    Dislikes Received:
    0
    :) Wishing you to find comfort with in these post ! You are not alone.
     
  6. Lou

    Lou Guest

    Helpful yet scary

    I do find the forum helpful and it's nice to see I am not alone...still scary to read it all. Acceptance is going to be an up hill battle. So much for being vain about my hair :broken: :wacko:
     
  7. Lou

    Lou Guest

    Losing more everyday....


    Patches growing bigger behind my ears down my nape and back up to my temples. I wear a hairnet at work but now just braid my hair down my back to hide the balding areas. No more buns or pony tails for me. My hair is getting thinner all over and I am loathing the day I have to finally cut it off. Been doing the squaric acid treatments and as of this week I have no inflammation occurring. Seems I'm immune to itching :). Wish I was immune to hair loss.... Feeling kind of down about it this weeks as it seems so much worse. It's over 100* in Idaho....yes summer is here finally. Trying to think up some head wraps that won't overheat. Oh did I mention hot flashes too...oh life could be much worse I guess...I'll just have to start concentrating harder on my new grand daughter due in October :). That will make number 5 for me!!!!!
     
  8. Lou

    Lou Guest

    Squaric acid treatment

    Started the SADE treatment and had a very severe reaction to .1 dose. Not sure this is all worth it in the long run. Anyone else doing squaric? Think my skin is now growing back and my lymph nodes have settled down. Still itchy and painful to touch. Help :)




     
  9. Ruth1613

    Ruth1613 Established Member

    Joined:
    Jun 4, 2014
    Messages:
    148
    Likes Received:
    0
    Dislikes Received:
    0
    Hi Lou, a new grandbaby sounds like the best medicine I can think of. I can't answer your question about squaric acid, but I can relate to your comments about the heat. I'm in Houston and sometimes you can actually see the steam rising off the pavement. Fortunately EVERYWHERE is air-conditioned, so I try to stay inside as much as possible when my head is covered either by a wig or a baseball cap. If I have to go to a meeting and I know the room will be warm, I carry a chilled water bottle and keep it capped and on my lap when not drinking. Keeping a cold cup of water with ice helps when necessary if and when it is possible. Hair loss is a hard thing and it's even worse when you are uncomfortable.
     
  10. starshine

    starshine Guest

    Hi Lou. I just started the DCPC treatment which is similar to Squaric Acid. I am also at 0.1 percent and have had minimal reaction so far, some redness, but no itch. I have noticed an increase in hair fall though which is very concerning as my hair is already very, very thin. You are definitely not alone, as I have been fighting this also for two years now and have tried a lot of things to try to save my hair, but when it is all said and done, I think it may just have to run its course.
     
  11. Lou

    Lou Guest

    Running its course sounds like my plan too

    Yep after the too severe reaction I think I am at the let it run it's course too. My thinning has become less all over but the nape area is still bare. Glad I still have some long hair to cover the area. It still sucks though....thanks for the reply and support. We all need a shoulder now and then!
     
  12. Joann

    Joann Moderator

    Joined:
    Mar 25, 2005
    Messages:
    2,399
    Likes Received:
    16
    Dislikes Received:
    0
    Hi Lou,

    I have never done Squaric acid treatment but like starshine I tried DCPC about 12 years ago now. Unfortunately like you I started to react to it as the concentration was increased each week. I was told it was necessary to get to a certain concentration for success. Four months in I had a very severe allergic reaction throughout my body. I still lost all my hair , which I can accept at this time, but am left with unsightly scars and occasional outbreaks, not on my face thankfully .
    So not worth it!

    If you are having this kind of reaction at .1 I would be hesitant to continue the treatment. Keep in mind that even when regrowth is achieved with the treatment once discontinued the hair could start to fall out again. None of the treatments available for Alopecia Areata at this time put a permanent halt to the immune system's mistaken attack on the hair follicles.

    Below is a picture of my left arm . I was only treated topically on my head.
    [​IMG]
     
  13. Lou

    Lou Guest

    Thanks Joann. I have similar looking outbreak areas but they are on the souls of my feet. My derm has left it up to me and I am not going to use the SADE again. Nape area still itchy and it's been a month now since the severe reaction. Hair continuing to shed from ear to ear down the back. I want to keep trying things even though I know nothing is guaranteed. Just not ready to quit yet. I can see you there smiling as you read this knowing you have been down my road :) It is so hard to give in...

    Lou
     

Share This Page