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Alopecia Areata turns to Alopecia Universalis?

Discussion in 'Women's Alopecia Universalis & Totalis' started by sam, Jan 19, 2014.

  1. sam

    sam Guest

    Hi,

    I was diagnosed with diffuse Alopecia Areata back in August of 2010. I get the Kenalog injections. I went into remission for a very short time in 2012, but then relapse. The thing is, with this relapse, I'm also noticing loss in my eye brows, eye lashes and other areas of my body.

    Is there anyone out there who had a similar experience? What was the outcome. Did you ever go into remission, or did you experience total hair loss everywhere?

    I know each person's alopecia is unique, just curious about others.

    SAM
     
  2. dancer

    dancer Experienced Member

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    Hi Sam

    Really sorry to hear your Alopecia Areata has relapsed and that now you are loosing body hair.I started with Alopecia Areata at 12 it progressed very quickly to Alopecia Universalis, I had a couple of small regrowths up to my twenties never enough to go without wig :( Alopecia Universalis is in my family.

    I really hope things get better for you soon X
     
  3. Penny1970

    Penny1970 Guest

    Ditto kiddo

    Hi Sam,
    I was diagnosed with Alopecia Areata when I was 13(holy cow that was 30 years ago now). Over the years I have had recurring small to medium sized spots and since I kept my hair long, I was always able to hide them. About a month ago my husband and I decided to spend our winter in Myrtle Beach and, before leaving Canada, decided it was a good idea to get our flu shot. I had noticed that in Julyish, part of my eyebrow had come out but had no other spots on my scalp. A few days after the flu shot Shocking amounts of hair were falling out. Today, about a month later, 90% of all my body hair has fallen out. I have never taken treatment for my Alopecia Areata.
    while it is still early, Im sorry that I cant give you any idea wether or not it will regrow.
    In the meantime, I am adjusting as best I can. I would prepare yourself for complete hairloss while at the same time hoping for the best. From what I have read, our odds of permanent regrowth go down once it turns to Alopecia Universalis, somewhere between 10-50%.
    This is a frustrating and infuriating condition, with very little answers and plenty of mystery. I mentioned the flu shot because we are always guessing at triggers and the timing of the shot and the Alopecia Universalis is very coincidental. That, coupled with Japanese research that links H1N1(which is part of the Ontario flushot) has been linked to baldness. My guess is that it can affect people who are predisposed.

    Everyone deals with this differently and it can be hard to stay positive but this is a disease with a ton of silver linings:
    most ALopecia sufferers are otherwise healthy
    many cancer patients go through this on top of being deathly ill
    when, and if, we decide to wear a wig it is actually easier to have great "hair" everyday
    people pay hundreds to rid themselves of unwanted bodyhair! *smile*
    my last hair appointment with highlights cost me over $100, my favorite wig so far was only$150


    I had long, naturally curly hair and, over the years, tended to use it as a security blanket. I would preach that it is a persons character that mattered most but was always secretly proud of my hair. Now, with it gone, I am excited to discover what lies beneath the vanity.

    Keep your chin up kiddo, it will be o.k. either way!

    Penny

     

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  4. sam

    sam Guest

    Thank you, dancer and Penny. Haven't logged on until today, so I'm sorry for the delayed gratitude.

    Penny, if my wigs looked as good as yours, I wouldn't care.

    Still responding to the kenalog on my head. Latisse worked on my eyelashes...hope it works well with the eyebrows. Everywhere else, I don't care.

    xo
     
  5. dancer

    dancer Experienced Member

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    Hi Sam

    Well it sounding promising! I really hope it continues for you. I know would be estatic just to have eyelashes, miss them soooo much! Leg hair not at all ;0
     
  6. Joann

    Joann Moderator

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    Hi Sam,

    I missed your original post but glad you checked back in to let us know how you're doing with the treatments you're trying. I had heard about using the Latisse for eyelashes but not eyebrows. Be sure to let us know how that goes as well as your continuing progress.

    P.S. Penny, I love all your wigs and the scarf looks beautiful on you too.:woot:

    Joann
     
  7. starshine

    starshine Guest

    Hi Sam. I also have diffuse Alopecia Areata for about two years now. I also lost all brows and hair on legs, underarms and other areas. I also use Latisse on my brows and along with the injections they have come back, but there are still patches missing that I fill in with liner. My leg hair is also patchy and very fine as is the underarm hair, but it is slowly returning as are other areas. It certainly is unpredictable. Are you doing any treatments now?
     
  8. sam

    sam Guest

    Yes....still doing the Kenalog injections, and I respond to them still, so that's a bonus. And I seem to shed lots less, so maybe I'm in remission on my scalp again. It's just the brows that bum me out. I just came back on today because I just noticed this morning that I no longer have hair on my arms. It was always fine, anyway, and people pay a lot for this so it's ok I guess. And no hair from the neck down. Like you, tiny little patches on my brows that are fillable with liner thank God. Guess I just hate living with the threat. I'm still able to wear extensions which look great. I don't do well with wigs. I just read some of your posts, Starshine. How are YOU doing? I'm hoping you found a derm that's treating you better. I had to fire my first one because she was very cold about it. Found one that I would travel to earth's end for....he's as persistent as this disease! Do you get the injections in your brows, too?
     
  9. starshine

    starshine Guest

    Yes, I still get injections in brows and scalp, but even with the Latisse, they just won't fill in completely. What kind of extensions do you have? I have toyed with the idea, but didn't know if my thin hair could handle extensions so I am still wearing a clip in topper mostly for volume. I know what you mean about the body hair. I don't care about not having it, or very little, it is just that it still means this stupid disease is there and a threat. What area are you from?
     
  10. sam

    sam Guest

    I live in New England. I've attached a link for the extensions that I use. Remy hair is the BEST. It moves so naturally. I've had these extensions since 2012, so they last a very long time as long as you don't sleep in them and as long as you take good care of them. There was a point back in 2012 where it was more difficult to wear the wig due to the amount of regrowth, so I scheduled a consult with my stylist about extensions. So if you're concerned about whether they're right for you, schedule a consult with your stylist as well. If they're an option for you, s/he will style them and show you how to wear them. I actually took notes as to which pieces go where on my scalp. At first it took me a little while to put them in, but now....15 minutes and DONE! I also wear clip-in bangs. I've attached a link for those as well. My insurance company requires that I purchase the wigs and extensions from a provider, but I've also had another insurance company that let me purchase them from whereever I want. I like the Head Shop Online....I've had lots of luck with them and they're prices are unbeatable.

    http://www.theheadshoponline.com/ea...p-in-remy-human-hair-extensions-easihair.html

    http://www.theheadshoponline.com/easihair-easibangs-clip-in-human-hair-bangs-by-easihair.html
     
  11. starshine

    starshine Guest

    Thanks so much Sam. I checked them out and they look really interesting. Are they easy on your bio hair? I looked at something similar a while ago, but it was one piece. Also, do they clip in? It says the bangs do, but was not sure about the extensions. You are lucky your insurance covers them, mine will not cover any hair pieces.
     
  12. sam

    sam Guest

    I know...I am so lucky that I get $500/year for this. It's a crime that all insurance companies don't offer some benefit. When I get new wigs, I have the old ones reconditioned so that I can give them to my provider so that she can donate them to someone who needs.

    Yes, the extensions are clip in ones and once you get used to them, they're a piece of cake to use. As long as your bio hair is long enough, you shouldn't have a problem. But I would go to a stylist for a consultation first, just to make sure that these will be something that you can use. I get the straight ones, and use Carusso Hair Setter to style them (I think Vidal Sassoon makes a similar item). Steam is far more gentle on the hair than heat curlers. Instead of the Carusso, another option might be to spray-dampen the extensions and wrap them around sponge curlers and let them set over night. The set will hold up all day. You can also color these, so if your stylist has difficulty matching your color, go a shade or two lighter so that you can easily color them. I've had the same set since 2012. As long as you don't abuse them, you'll have them for a very long time!
     
  13. Coachjen

    Coachjen Guest

    Not sure what Kenalog injections are.

    What are Kenalog injections?
     
  14. Ruth1613

    Ruth1613 Established Member

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    One thing to add about brows..... I lost the outer 3/4 of mine around 25 years ago. They had always been thin. At the time I was pretty upset about it, but as the years have gone by and my forehead has moved south, I find I can still "draw" them at the same height they used to be. It's by no means a browlift, but it helps a little :)
     
  15. Joann

    Joann Moderator

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    Hi Jen,

    Kenalog injections contain a steroid which helps with inflammation. They are used to treat Alopecia Areata in patients with patchy loss that is less than 50% of the total head. They aren't a cure for Alopecia Areata just a means of trying to jumpstart regrowth in hopes
    that spontaneous remission will occur and the hair can continue to grow.

    They can cause denting an thinning of skin in the areas being injected. That's why they are generally discontinued once regrowth is well on it's way. The denting usually fills in after a time.

    Hope this info helps.:)

    Joann
     

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