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I'm a model. And was diagnosed with Alopecia Areata.

Discussion in 'Women's Alopecia Areata' started by DianaMiranda, Feb 2, 2008.

  1. ginawat

    ginawat Guest


    I am so glad something is working for you!

    Can someone explain how prednisone can help with Alopecia Areata? I thought Alopecia Areata was a autoimmune issue and that a immune supressor would be the RX....why would a steroid work?
     
  2. Merry

    Merry Guest

    Gina ~ Prednisone is a steroid that acts as a very strong anti inflammatory. With Alopecia Areata you have a weird form of inflammation way down at and surrounding the hair follicles. That is what causes your hair to fall out. Many people stop shedding and some regrow some hair while on prednisone. The problem is that as soon as you come off the steroids in almost every case the hair just falls out again. Most doctors won't prescribe this any more unless a patient is so emotional that her mental health issues are more serious than the harm that the oral steroids can do to your bones and organs.
     
  3. ginawat

    ginawat Guest

    Thanks Merry...

    I guess this leads me to the inflammation part again. Seems to me that a steroid would simply "mask" the problem and not cure it (otherwise stopping wouldn't bring it all back again) So - how is it that they can't determine the REASON for the inflammation? To many times (in my opinion) the focus is on treating the symptom and not the cause. If only we could get to the "root" of what is causing this in all of us. I may not have Alopecia Areata but I do infact have serious inflammation and serious hair loss because of it.

    I don't think I have diffuse Alopecia Areata - despite having what sounds like the same pattern as you. I just don't have those anagen hairs.....or maybe I do and just can't idenetify them as such (I tied the whole idex finger thing and still couldn't picture what a anagen hair looks like! )

    Anyway - we both have inflammation and I truly believe if we all could get that in check we could grow hair. We just need to find a way w/o the use of steroids.

    What other treatment methods have you tried Merry?

    Thanks
     
  4. Merry

    Merry Guest

    Oh, Gina, that's the million dolllar question. They really do not know what causes Alopecia Areata. MOST doctors believe it is an autoimmune disease. As is true for MOST autoimmune diseases there is NO CURE. And, there are very limited funds dedicated to finding a cure for Alopecia Areata, it just is not a priority in the medical field as so many believe that since it is non life threatening, it's not that big of a deal. (Of course WE know how it affects our lives.)
    Back to Prednisone. I have degenerative disc disease. About 6 months ago my back was so bad and they said there was so much inflammation surrounding my discs they put me on a taper down oral dose of steroids. Well, it got the inflammation down, allowed me to go back to physical therapy and get going on my exercise program and helped lower my pain level in my back. That was a GOOD use of the drug. However, using it to TEMPORARILY reduce inflammation for an autoimmune disease that will come back as soon as you stop taking it, by most doctors standards, is not a good use of it, which is why in your modern day research you'll see it is not recommended.

    Here's another good use. People initially diagnosed with Rhumatoid arthritis can have lots of inflammation in their hands and joints. Initially, a doctor may prescribe oral steroids, reduce the inflammation, and then after 2 or 3 weeks switch the patient over to one of the long term meds that should help them with the RA. Unfortunately, there is no med to go on to keep Alopecia Areata away.

    The number one, first treatment that most derms want you to try for diffuse Alopecia Areata is topical corticosteroids. They just irritated my scalp and I've never spoken with anyone who said they had positive results from these drops.

    And, no, I really cannot recommend anything I've tried except to say that FOR ME, the use of antihistamines prescribed by my hair derm has reduced my hairloss. I still lose probably 75 to over 100 hairs per day. And, remember that I've already lost over 60 percent of my hair. I'm just hoping I can stay in my toppers for as long as possible before the Alopecia Areata progresses even more as I know I'll be moving into full wigs at one point, and that is a horror for me to think about.
     
  5. ginawat

    ginawat Guest

    Merry - you sound like a very knowledgeable person. We must think about this and try and find some answers. We are our best doctors.

    There has GOT to be some link between all of us who suffer. I'm sure of it.

    I'm a puzzle-fitter. I refuse to lay down and accept this.
     
  6. Lee112780

    Lee112780 Guest

    She got Anthony Keides!! And he is my god :)
     
  7. Lee112780

    Lee112780 Guest


    Me too! I have the worst possible case of it..Alopecia Universalis and I refuse to give up because there has to be a cure out there. As far as Prednisone...in my experience...it takes a long time to work...and as Merry said, as soon as you stop, the hair will fall out again. Thats exactly what happened to me. It "held on" the to little hair that I had...did not make new hair grow tho. Then when I got off it (LOTS of nasty side effects), the little hair I had came out...and now I have none exept for some leg hair :( for now...but I have a strage feeling it will come back for me...but then, it will prolly happen again when i go through something stressful like having children or something.
     
  8. Merry

    Merry Guest

    I like your attitude Gina, I really do. You sound like me a few years ago. While I don't believe, at my age, that I'll ever get my hair back, I certainly want everything humanly possible to be done so the children today do not have to deal with this life altering disease. Of course I give donations and have participated in charity outings to raise money for the cause. There has to be a breakthrough someday!
     
  9. ginawat

    ginawat Guest

    Merry - do you have children? If so - what happened with your condition during and after childbirth? Were you ever on any medication (mainly bcps)

    I get a lot of flack on this site because I won't "treat" my condition with the various drugs out there. The fact of the matter is I'm scared. I really hate to clutter this issue with lots of drugs that have lots of side effects. Then I'll always be second guessing - "is it this or that drug making it worse or was it getting worse anyway, etc" I just feel (and have always felt) that something is not right with me health-wise....and that this conditon (whether it be TE,Androgenetic Alopecia, or diffuse Alopecia Areata) is the warning sign my body is trying to deliver. Bottom line I just don't think hormone alteration (bcps) or a drug for the prostate (Propecia) is going to get my hormones back on track. Even if it gets me hair what will it be doing to my general health while doing so.

    I think this is more of an immunity issue - which may very well be causing a hormonal disruption at the same time. I know I am losing time along with the hair...but I just can't seem to fgure out what is best for me.

    I have become (like many others) devastated by this. I feel it has cheated me out of so much happiness. I am 38 and at this time had wanted to be pregnant with my second child. This condtion has robbed me of that. My husband and I agree that while I very well might be physically healthy enough to conceive and carry a child I am not mentally wel enough should this continue to progress as it seems to be doing. Throughout this my my faith has been tested as well as my marriage, job and other close relationsheps (friends) I am breathing...but not living and no matter how much I try I just can't seem to come to grips with this emotionally.

    I don't know where to turn at this point.

    Thanks for listening....
    G
     
  10. SAMANTHA07

    SAMANTHA07 Guest

    I am breathing...but not living and no matter how much I try I just can't seem to come to grips with this emotionally.

    I don't know where to turn at this point.

    Thanks for listening....
    G[/quote]


    oh gina, that how i am feeling.
    sometimes i just can't accept it.
    it's like a bad dream
     
  11. Guest

    Guest Guest

    samantha,
    it doesn't have to be a bad thing.
    you know there are many stunningly beautiful bald women.

    ............. doll yourself sexy and ultra-feminine and use your unique and sensually smooth bald look to your advantage.
    that is how i first was attractive to my handsome husband.
    bald women are beautiful!
     
  12. Blue Bird

    Blue Bird Guest

    Carol

    Do you think it helped you be more confident/ok with your baldness by meeting a man WHILE you were bald, that was still atttracted to you?? I think it would...

    I am not bald and I have a BF. Its painful to know they have seen the way you USED to look, and now with the hair loss.
     
  13. ginawat

    ginawat Guest

    great question BH!

    Also - Carol

    I love you confidence but wonder why you wear a wig to work if you love the way you look bald. I'm worried because I think I would rather go the shaved head route versus wigs (when toppers won't do) and it scares me that a woman as comfortable in their skin as you are still resorts to a wig for work.
     
  14. SAMANTHA07

    SAMANTHA07 Guest

    i know carol,
    i really admire you.
    just that i think i need time.
    i think also that you grew stronger by time.

    and yes sometimes i wonder what my husband thinks altough he says i am still beautiful.
    i changed so much, no hair i had always long hair.
    no brows although now i tatooed them.
    almost no lashes, so no eye definition.

    i am going to tell the truth, i am not confident in making love bald.
    perhaps for now.
    i have to wear something on my head or the wig.



    for gina:
    i wear a wig and it is nice feeling believe me.
    i thin carol likes to change that's why she wears wigs
     
  15. Guest

    Guest Guest

    hi ladies!

    yes, i met my husband at a nightclub, and i was dolled up in a sexy dress, nylons, high heels, with my makeup on and long dangle earrings, and i had my bald look that evening, no headscarf or wig.

    i got more postive attention from handsome men, not less, when i really dolled myself up ultra-feminine and wore my bald look. it can be a unique sensual fashion style. not everyone likes it on a lady, but some people do.

    i usually only wear a wig only at work.
    otherwise i usually wear headscarves or my bald look.
    i'm at home now, and i am wearing a headscarf tied back gypsy style.

    the reason i wear a wig at work is because i don't want to attract to much attention to myself.
    and i don't want men who are into bald women hitting on me for dates, which happens more often when you wear your bald look.
    i am married, i have a husband.
     
  16. Blue Bird

    Blue Bird Guest

    Thanks Carol!
     
  17. angieangie

    angieangie Guest

    Carol, you really helped me today. I just started Minoxidil and I'm scared for the shed.
     
  18. Mirkin

    Mirkin Guest

    Carol who are amazing. I wear wigs a lot now and love them. I was a blond today ,tomorrow I'll be red. If my hair shed keeps up I'm cutting it off. I think short cuts are adorable. I am with you Bunnyheather ,I have a bf also and for him to see me bald would make me feel strange. If I was bald when we met I would be ok. I would love to find peace with being bald if that day comes. I am still a beautiful woman and hair or no hair will change that. I have to be strong.
     
  19. angieangie

    angieangie Guest

    Mirkin, when can we see your red wig? I'm exited! :jump:
     
  20. Redheaduk

    Redheaduk Guest

    Hi Samantha - I am with you on this. Although I still have enough hair for none of my friends to really see how bald I am, my boyfriend sees me styling my hair, washing my hair, crying about it and when I've flipped it up when asleep he sees the lack of it. I know he's okay with it at times but the thought of him seeing my naked wee head in the throes of passion really puts me off. :$
     

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