Alopecia World
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Are treatments worth it?
Hi Everyone!
I am new to this forum so I'll start with some background information about myself. I am 19 and I developed Alopecia Areata subtype Ophiasis last February. I was in the shower and clumps and clumps of my hair started falling out one day, and then I continued to lose clumps and clumps of hair all day everyday. I was wrongly diagnosed with Telogen Effluvium in March because it appeared that I was losing hair all over my scalp. However, when my eyebrows fell out over night and I started losing hair on other areas of my body and continued to notice a large amount of scalp hair falling out (I was completely bald on my temples and the area above the my back of my neck along with some random patches off of the ophiasis pattern) I got a second opinion, and I was diagnosed with alopecia areata. We started doing corticosteroid shots and DNCB (a form of topical immunotherapy) as soon as I got diagnosed. I have continued these treatments since June when I was first diagnosed. I get the corticosteroid shots once every month and I put DNCB on every other night. I also started wearing a wig as well because my hair was so thin and more than 60% of my head was bald.
I'm making this post because recently I have really been questioning whether the treatments for alopecia areata are really worth it. I know that getting treatment is a personal decision, but I wanted to hear what other people with alopecia thought about it. Back when I first started losing my hair I thought that getting my hair back was so important and that I wouldn't be happy ever again if it didn't come back, but now, as much as I would love it is my hair would come back, I am not sure that the treatments are worth the pain and risks associated with them. The corticosteroid shots are really painful (especially in the eyebrows) and DNCB makes my head so itchy that I have a hard time sleeping. DNCB is also a carcinogen and it has a 65% absorption rate. Steroids can mess with your lipid levels and I read that there is some evidence that the injections can make people lose their hair prematurely later in life which seems really counterproductive to me. I have had regrowth with the treatments that I am doing, but the hair on my eyebrow falls out as soon as I start to have hope that I could have eyebrows again. My scalp hair is regrowing but I read that I would most likely have to keep doing treatments to maintain it. I guess I'm just at a point where I am really questioning how worth it is to do treatments when it isn't a cure and I will have to most likely do it long term to keep any results that I have.
It would be really helpful if you guys could let me know what you decided and why you made that decision. I am just so conflicted right now between doing everything I can to get my hair back or letting go of my hair and moving on with my life.
Sorry for such a long post, and thank you in advance for any responses!
Replies to This Discussion
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Permalink Reply by Craig A. on
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Hi. In my experience the shots are only worth it for small areas. The scalp is very tolerable but the eyebrows was the worst pain ever when it comes to shots. As a guy I even attempted shots for my beard. As others have said it may work and then it will fall out again.. everybody is different.
As of today I've had AU for the last seven years and I've come to realize I may never have my hair again.
I know it is all scary and new for you. Everyone situation is different hopefully it won't progress or continue on for a long time for you.
I have had cosmetic tattoos, pigment not ink, done for my eyebrows, they last six to eight months and are easily touched up. I didn't find the experience painful at all. If you go this route find someone you really trust.
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Permalink Reply by Dayna on
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Hi Craig!
I completely agree that the eyebrows hurt the worst with the shots! Thank you for the reply and the support! At this point I am trying to hope for the best but prepare for the worst.
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Permalink Reply by Barbara on
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Hi Dayna, I was older than you are when I had hair loss for the first time. It wasn't severe and it came back. I never thought of it again until right before I got married I lost all my hair from mid ear down all the way around my head. I was under a lot of stress at the time. I got steroid injections and it came back so I didn't think about it again. Then a few years ago I started losing hair and getting thin in patches. I started taking biotin and using a shampoo for thinning hair and it came back. I still didn't consider myself as having alopecia until all my hair started coming out. I went completely bald quite suddenly. I also lost all my hair, eyebrows, lashes, even the hairs in my nose. I have to say I was pretty upset. I drew on my brows and lined my lids and sometimes wore fake eyelashes and started wearing a wig. Then I noticed a few hairs here and there and my lashes and eyebrows came back. I was excited. My head was still slick bald. I went to my dermatologist for something else and he tried steroid injections in a small area and hair started to come back. I started getting the injections all over and it's coming in all over! It's wild and sticking out everywhere and I still wear a wig until it grows in more. Is it worth the pain? For me it is. Will it come back out? May-be. Right now I am happy and no one will discourage me about it. If it comes out again, so be it. If it doesn't then yay! It is a personal choice that you will have to make.
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Permalink Reply by Victoria Panaccione on
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Hi Dayna,
If I had to do it all over again, I wished I did not spend so much time crying over my alopecia and loss of hair. I wish I could have been stronger and sought out those to help me learn to be stronger from the get go. I did a fair amount of crying (as well as the whole gamut of treatments). I also recognize the amount of personal growth my alopecia allowed me, but it took 6-8 years out of my young life. For me looking back it just seemed that in the whole picture of A LIFE- baldness is not all that important. I wear freedom hair now and have been wearing it since my 20's. Love it and it has allowed me to get on with my life. I now stencil my eyebrows in and use a softer brush to soften the strokes. 3 minutes. I am ready for my day much faster than my friends who have hair as I only have to wash and style my hair once every couple of weeks and I don't have to shave my legs. Youth is beauty so let it shine through and get on with your life and what you want to accomplish!
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Permalink Reply by Pamela on
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Victoria, where did you get your first style. Is it the same as your picture.
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The photo in the picture was taken this past summer. I'm in my 50's and I've been wearing freedom hair like wig since my 20's. I have an excellent hair stylist, expensive but really good at cuts. Glad I only need to see her maybe once a year. I think in that pic I had the sides up in barrettes. I'm live in So Cal.Vicky
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I had mine styled yesterday and hate it. I hangs down in my eyes so I've put bobbi pins in to keep it out. I didn't want bangs, but maybe I will have to re-think that. I'm 69 and wish I would have gotten a shorter one. I look like a witch with out the hat. I live in FL. and the piece is 10 inches.
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I always have bangs with these hair pieces. How the stylist does them for me is to give me a very VERY thin shorter wispy layer of "baby bangs" UNDER the bangs. This way if its windy there's some depth. Then she does gives me a thin but adequate layer of bangs but not bluntly cut.
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Thank you for the reply! This post definitely makes me feel better about the situation! I have definitely cried a ton ever since my hair started falling out. I'm in college right now, and I started avoiding social events for a while because I didn't want people to see me without eyebrows and with most of my head being bald. Even wearing wigs makes me self conscious because I'm worried people will notice. I am definitely going to look into getting a freedom wig! I am also making my goal to be more social despite my alopecia. I have a really awesome boyfriend who has been really supportive through this whole experience and he is also motivating me to be more social and experience life more the way that I used to before I lost my hair!
Thank you again for your post! It is good to hear that there are some perks to alopecia and that the emotional side of the condition gets better! Best of luck to you!
Side Note: the black lab puppy in your profile picture is so adorable!!!
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Hi, My heart aches for you and so young. Know u have choices but the pain you have to go through and still not sure it works it is up to you. In my mid 70's started loosing my hair oh yes had a choice to go to USF in SF Ca not worth it b/c long drive. Yes still loosing my hair but so now i live with my hair pieces that is the best and only way to go. You have many styles to choose from and colors. This has been 5 years now and lost little hair then now it is getting worse. I wish you all the luck and have fun going with wigs as i have even for bad hair day, Don't go for treatment. Google for wigs, out let for wigs excellent. I pay no more than 125.00 cheaper when on sale. Hope this helps you out. Happy New Year.
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I've had Alopecia Universalis for 34 years.
Eyebrows & Eyelashes:I am successfully using bimatoprost (Latisse) to treat my Alopecia Universalis for my eyebrows and eyelashes. I get the generic bimatoprost from canada mail order for about 1/5 of the cost.
More recently I started Xeljanz and after 6 months have had significant regrowth so far.
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