Alopecia World
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Recently diagnosed and frustrated!
Hi guys, I was diagnosed with alocia areata 2 months ago. Hoping someone can give me some information. It began with a small patch on the back of my head and became larger with other areas of hairloss throughout my head. I'm currently on steroid lotion for the areas. A small area in the back is growing but not the other spots. The dermatologist is talking about doing steroid injections when I go for my recheck appointment next month. Does anyone know if they work or if it's worth doing? I feel like I have spent so much money so far and it seems like it's not even worth it. Some days I feel like just shaving my head and getting a wig but can't get the guts to do it. I know there is oral medications too, however the dermatologist doesn't seem interested in that right now. I just don't want to lose the hair I have. For now I wear my hair in a pony tail down low to cover the areas. I was told not to color, flat iron or blow dry my hair. Does anyone know about the steroid injections in the muscle and if there is any improvement? My hair is half as thick as it use to be. I'm just frustrated! I know that I could have a much worse disease than hair falling out, so I guess I'm lucky in the fact that otherwise my health is good. Any info is much appreciated.
Replies to This Discussion
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Permalink Reply by dennis on
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Hi Lisa,
I started with a fingerprint size spot on the side of my head which followed by over thirty spots the largest the size of a tennis ball. I joined this site like yourself to find out what to do if anything. It came down to when to shave the remaining hair and continue my life without it. That was a moment in time going from having a full head of hair to a complete shaved head. I spent many days with a baseball hat and realized Im the same old me with or without hair and any true friends realize this also. I started with the spot in May of 2010 by Aug I realized it was Alopecia Areata and after getting accustomed to being bald, my hair started growing back in February of 2011. Today I have my hair back and its darker than before I lost it. I still visit this site on occasion because I feel for the people who still deal with it. Im not sure I wont lose it again. What will be will be. I would ditch the steroid treatment and let nature take it course. Some say its stress related but who knows. Be happy with who you are. Theres always wigs scarves and hats for the security factor. Good luck to you. Dennis
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Permalink Reply by Lisa on
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Thanks for replying. I am considering stopping the treatment just to see what the outcome is. Friends and family have helped a lot. Thanks again.
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Permalink Reply by BlueandPink on
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HEY welcome to the Club!
I lost my hair in spots in AUG of 2010, did the injections on my head! HURT LIKE HELL!!! But its way better then the side effects of oral medication.
The injections DID NOT work for me, by the end of 2011 my hair was thin and I was subjected to caps. Feb 2011 all my hair was pretty much gone.
The dr, I was seeing referred to another dr. because I am somewhat high risk for oral medication because I am in remission from Non Hodgkin lymphoma cancer.
I started prednisone MAY 2011, my hair grew and so did my waist line. I was on the medication for 3months, I looked like a balloon, i gained 20lbs. Some people didnt even recognize me, or they would say you look different (and they meant it in a bad way..lol).
PIST and disgusted with all the side effects (which u will experience 99% of all of them side effects) of prednisone I got off of it.....
My hair DID grow back with prednisone, with a nice big bald spot missing on the side, but I was content with that. THe bald spot gave me the impression that this problem was still very active despite being on prednisone, as soon as I got off the drug my hair fell out.
So my dr. said we can be more aggressive and do cyclosporine and prednisone and lotions. I had all the drugs he wanted me to do in my possession, but I came home a did a lot of research on them....and decided this wasnt for me. I have issues already and these medications are going to make it worse. In addition my brothers getting married this summer and I Did not want to look like A balloon at his wedding.
Sometimes the meds work, sometimes they dont!
Ive been reading many people stories and a lot of them say that they were in prednisone for many years and they got tired of the drug so they just went bald.Prednisone is a HORRIBLE drug to be on long term!!
I have many friends who are African American or other, that have hair issues....one of my friends told me.. "Ive been dealing with hair issues since i was 12yrs, either it be by perming, extensions, weaves, braids, or wigs. Dont stay on meds that are going to mess you up and cause more REAL problems, because at the end of the day, its just not worth it!"
So Ive been off the meds since last summer, my hair has spots of hair growing but nothing serious. This past week I finally dropped the 20lbs that I gained (more than 6mon ago). And now will soon be purchasing my first European wig. IT took me more than a year to get a grip with my life and in embrace the issue.
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After dealing with AU for 2 1/2 years, I starting getting steroid injections back in December with success. My doctor stopped giving them to me in April to see if my hair would stay off the shots. July 4th was my unveiling of newly grown hair and on the 6th I decided to go get it colored. A few days after getting it colored, it now started all falling back out again. My doctor doesn't think getting it colored has anything to do with it falling back out. Does anyone else have an opinion on this because I guess I can't help but think there is a connection to it because of the timing. I started back on injections last week and because of how much has fallen out, will be back in a wig I'm predicting within the next couple days. :( Very sad since I got a taste of having my hair back again.
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Permalink Reply by Tallgirl on
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I had the tar shampoo, creams, UV light treatments, shots (which leave a dent in your tissue and hurt like heck), and prednisone pills. Sure they tell you, with the shots, and it may work "in three months," but if you have AA it may grow back in three months on its own, too. Your call if you want to try all these. My grandma had prednisone and claimed it made her bones brittle, so I stopped those. Interestingly enough, when I was at college I stopped all treatments and my hair grew back for fifteen years, until I made the mistake of changing my chemistry with birth control pills mid-thirties (then it went to AT, AU, and now AT again, probably forever at my age.
The New England Journal of Medicine, April 2012 issue, has a very thorough article on the Medical Progress of Alopecia Areata. I suggest you read this online. Good luck, and welcome to the "club."
See if you can join up with the alopecia conference that starts tomorrow in Washington, D. C. www.naaf.org. Very informative and supportive.
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