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Where's All the Alopecians That Have Grown Their Hair Back

Discussion in 'Women's Alopecia Areata' started by Karen, May 13, 2006.

  1. at_a_loss

    at_a_loss Guest

    Dammit Gorgi... You almost made me miss shaving my legs...

    Thank you for an honest post... I've been thinking along some of these same lines that past few days as I watch my regrowth growing... and wonder how devastating it will be watching it all fall out again... :?
     
  2. Gorgi

    Gorgi Guest

    Memory

    I will be honest again, since there was certainly no silver lining with the cyclo - I mean - dig these side effects:

    1. Gums swelling and crawling over my teeth - even the front teeth. Can I get a "YUCK!"

    2. Gums sometimes bleeding when I brushed my teeth and always bleeding when I flossed, so that meant bleeding every day. I'd floss and look like someone belted me in the mouth.

    3. Stomach pains from the first dose in the morning - like swallowing air with a vinegar chaser from a glass filled with ground glass. Always a treat.

    4. Suddenly - tho it really wasn't - my muscles lost most of their tone. Not that I was or have ever been a hard body - but I think even my forehead got flabby.

    5. Over time, the body hair got a bit on the WTF is THIS? side. Shaved my legs at 7 am, stubble by 7:05. Netherland hair poking thru cotton panties - that's some seriously sharp and not so welcome hair. Forget bikini line shaves - I needed a hedge trimmer.

    6. Got me some (as my friend Fade calls them) "Grandad eyebrows." Had to use those special razors to kinda trim them. BTW, the netherland hairs BROKE one of those razors.

    7. Leg hair would wake me up in the middle of the night - stubble pinching me.

    Would I take all those side effects again for hair on my head, eyebrows and Bambi-would-die-of-envy lashes?

    All but the gum thing - that was just too gross. But the gum thing is inevitable with cyclo - so the old Catch-22 would be in play.

    Other than that, which, since my memory was serving me to help me forget being a bald chick, so I would, of course, pitch a bitch over the gum thing, I would take all those side effects again to have that thick, curly hair - and my face back.

    In my defense, I will say that for those 6 months, I cherished every day with hair and never forgot to thank God for it. And God must have heard, since when I lost it again, I didn't rail against him or hate myself for having a disease. That has been the one blessing I am grateful for in all this.
     
  3. Guest

    Guest Guest

    bit confused

    Found all your posts really encouraging as i have been unable to find a good site which answers questions about alopecia and has a community board.

    I'll just give you a quick rundown of whats been happening to my head so far as i feel that i am going in circles when trying to find information.

    My boyfriend found a small bald patch on the crown of my head last August and i was devastated( i had suspected i was a bit vain but this confirmed it) As the patch got bigger i cut my hair off and wore a hat most of the time.

    In January it started to grow back and i thought that that would be the end of it. About three weeks ago i found a tiny wee patch at the back of my neck but the hair loss has been rapid and all that hair has fallen out and now the bald area is not so much a patch but looks like i have gone mad with a razor and given myself an undercut.

    I have been to my doctor and he prescribed me a topical steroid cream and therein lies my question; Are these creams effective? I know a few alopecia sufferes but they are male and have had full regrowth and no problems since but none have used the cream.

    My doctor was very breezy about the whole thing and didn't really explain what the cream is supposed to do. I take it that it is not a miracle cure, but if any of you have used it could you let me know how it worked for you.

    It would be greatly appreciated!

    lol xxxxxxx
     
  4. IONLYWISH

    IONLYWISH Guest

    Hi Magrat,
    I have Alopecia Areata. I lost a little more than half of the hair on the nape of my neck last Dec. My derm started me on cortizone injections literally within minutes of giving me my diagnosis. I have had 8 series of injections (approximately once a month). I also use a topical ointment. The nape of the neck is one of the most difficult areas because it is often slow to respond to treatment. I credit the regrowth that I have to agressively being treated with the cortizone injections. Is the doctor that you saw a dermatologist? If not, you may want to see a derm. If the doctor was a derm then you may want to consider seeing a derm that takes your disease more seriously. Glad you found us here. There are many wonderful, supportive, and informative women here to help you through this. Don't hesitate to ask any questions that you have and please let us know how you are doing.
    Twins
     
  5. kaybob

    kaybob Guest

    This may sound very stupid but since I have lost my hair and grown it again numerous times over the past 32years I am now glad that it has finally gone!! the pain that I experienced each time it came out again was
    agonising, now I can accept it, wear my wig and know that I won't have to go through the trauma again. My hair has controlled my life "OH great I have beautiful thick curly hair BUT how long for. 5mths later going thin again, stress, crying, angry, another 2months, it's gone again and back to the wig for anther 15/18mths the pain was unbearable. That has been my pattern since I was 28yrs old. Now I know that it has GONE for ever and I can accept the rest of my life will be in a wig, no more ups and downs I fell that I will be more contented with life. I sincerly hope that the medical profession can find a cure for you younger ladies and that you will not have to live as I have. Best wishes to you all
     
  6. at_a_loss

    at_a_loss Guest

    Re: bit confused

    I'm assuming by doctor you mean a general practitioner... if so, you need to have him/her refer you to a dermatologist who can prescribe you what you need. GPs have a tendency to brush it off with a cream or a special shampoo while a dermatologist has the prescribing authority to put you on a more aggressive treatment...

    Stick around! There are lots of great ladies on this board!! ;)
     
  7. Guest

    Guest Guest

    Re: Where's All the Alopecians That Have Grown Their Hair Ba

    I have alopecia since 1996 and lost only small patches to begin with. I then had my first child in 2001 and lost ALL my hair (universalis) about 6 months after she was born. I then got preg. with my second child (a boy) and about 3 months into the preg. my hair started regrowing...to this day I have a full head of hair back and almost all of my body hair...strange! I am however finding some thinning spots lately and wonder it I may be on the outs again. I didn't go through any treatments of any sort. The only thing that helped was being preg, apparently. But, I'm not going to be doing that again if my hair falls out again.

    Anyway, in health, hair and happiness.
    Sandi


     
  8. at_a_loss

    at_a_loss Guest

    Re: Where's All the Alopecians That Have Grown Their Hair Ba

    That would have to be the MOST costly treatment option ever... :lol:
     
  9. Guest

    Guest Guest

    The women who have have Alopecia Areata and have grown it back do not come on to the sight because they do not exist, Alopecia Areata does not go away, once you have it, you have it for life
     
  10. at_a_loss

    at_a_loss Guest

    Thank Anonymous for your words of encouragement... You are correct in saying that you have it for life... Supposedly, all Alopecia Areata'ers are predispositioned from birth and the hair loss is simply triggered... HOWEVER, it is entirely possible to have regrowth and healthy hair for years at a time... I'm living proof...

    Don't give up hope!!!
     
  11. Guest

    Guest Guest

    Alopecia Areata can go away; almost all my family memebers have had Alopecia Areata for a short period and it was/ is always just a few patches, they all had spontaneous regrowth; I'm the unlucky one with AT for years.
     
  12. at_a_loss

    at_a_loss Guest

    AT doesn't grow back?? ummmm... I must be the lucky one on that one too... It IS possible...
     
  13. Guest

    Guest Guest

    Hi,

    i do have some regrowth now, but you can hardly see it, my head is covered for +/-60% with very short dark hairs, but they dont grow longer. I still have my brows and lashes though. My father used to have it when he was younger, 2 of my brothers and my sister had patches, but they all grew back. It's just mine that fell out all over my scalp and never grew back. My husband also had hairloss when he was 3 years old, he lost all hair over his body and it grew all back. I wonder why my hair doesn't grow back. But I do see people with alopecia quite often, so it's not such an uncommon disease. I hope it grows back one day!
     
  14. Cat

    Cat Guest

    Hi all,

    I've not been posting much, but read every day....searching for encouragment. You ladies are amazing.

    I went to the derm again today, a few more injections at the nape of my neck only. He indicated to me that, although I have alot of regrowth, there is no 'END' to all this. My extensions have saved my sanity. The shedding is down considerably, but I don't even know what normal would be anymore. 50% of my hair has fallen, most all of the spots have regrowth, except the nape. The derm said the regrowth may fall, time will tell. WTF??? I mean....WTF??????? Is there no happy ending??

    When I do post here I always feel like such a downer. Sorry for that....As you know, this is hard to deal with. Last month when I went to the derm, he said all was good, this month all is still good (so he says....its not his head)!!!!!

    When do you give up and shave it off?? It started for me in Feb. 06. without the extensions, I would absolutley be in a wig. No way of hiding anything without help. I want normal life w/o fearing the shower or the hairbrush.
     
  15. at_a_loss

    at_a_loss Guest

    Cat ~

    You sound just like I have in the past... Yes... you have Alopecia Areata... Yes... you are losing your hair... NO... it does not have to last forever...

    Although you have been diagnosed with Alopecia Areata, it does not necessarily mean that you will be bald for the rest of your life NOR does it mean that you will have to endure injections for eternity...

    HAVE HOPE!!

    I have had Alopecia Areata for 30 years... I have had regrowth and also lost my hair countless times thoughout my lifetime... but I have also seen MANY cases of women who have regrown their hair from one Alopecia Areata bout only to keep it for the rest of their life... Alopecia Areata is impossible to STOP... You must let it run it's course and continue with the steroid injections (THEY WORK!!) The regrowth you have now is proof of that... And the fact that you have regrowth is encouraging in itself... :wink:

    The nape of the neck is ALWAYS the most difficult to grow back... Personally, I have NEVER had hair there... :cry: but there are other Alopecia Areata women who will tell you that it takes a LONG time for that part to come back...

    Don't worry about coming on here and sounding like a downer... this is what this forum is for... Things you need to get off your chest and out of your head that you can't tell other people... It's okay... ;)

    And lastly, DON'T EVER GIVE UP!!!
     
  16. IONLYWISH

    IONLYWISH Guest

    Cat,
    Melanie is absolutely correct! I lost the hair on the nape of my neck in December 2005. I had my 1st injections on Jan. 4, 2006. I have had 8 series of injections total. Slowly, very slowly the hair has been coming back. It seems like it is taking forever. I have one part of the area that has been especially stubborn, but there are now small hairs in most of that spot. Let the doctor know that you aren't giving up and you don't want him to either. Good luck.
    Twins
     
  17. maisydaisy

    maisydaisy Guest

    This is probably a stupid question, but can Alopecia Universalis grow back? I've heard people share stories about Alopecia Areata and AT regrowth, but nothing about Alopecia Universalis.
     
  18. at_a_loss

    at_a_loss Guest

    Although rare, yes it can happen.
     
  19. maisydaisy

    maisydaisy Guest

    Ok, another question. I don't know how to classify myself and so don't know how likely I am to regrow hair, so can you ladies help me?
    I lost all the hair on my head except for a patch of regrowth I'd gotten from an old patch of Alopecia Areata. It's about 1/2" long and seems to grow very, very slowly. Additionally, I have some random single hairs elsewhere on my head.

    I lost all my eyebrows and eyelashes but have regrown my eyebrows thanks to cortisone injections.

    I've lost some, but not all, of the rest of my body hair.

    What am I...severe Alopecia Areata, AT or Alopecia Universalis? My derm calls me Alopecia Areata, but I don't know...
     
  20. at_a_loss

    at_a_loss Guest

    Classification according to the encyclopedia of Melanie:

    Alopecia Areata - (severe or non) means loss of hair in patches whether that mean patches on your legs, arms, pubic region, scalp, lashes or brows... I'm not sure at what point Alopecia Areata becomes diffuse Alopecia Areata as I have been in the same boat as you with nearly 99.9% of my scalp and facial hair gone and the docs still saying it's Alopecia Areata

    AT - means total loss of all facial hair and scalp hair (vellus or otherwise)

    Alopecia Universalis - means total loss of all hair (vellus or otherwise)

    Once again, I am not a doctor... I just have read alot...
     

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