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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 Dayna on
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Thank you for the reply! My dermatologist said that mine is non-scarring which is probably why I have some hair regrowth, but I am having a lot of the same experiences that people talked about in the Steroid side-effects discussion. The hair that is growing in is a lot thinner than my normal hair and it seems to have a different texture which I really don't like. I was also shocked that the long term use of steroid injections could be lethal! My dermatologist gave me my first set of shots as soon as she diagnosed me like it was no big deal!
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Permalink Reply by Finley on
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Funny how they act like it's nothing, and it can truly affect your health. With my missing chunk of lashes and eyebrow loss (then partial re-growth) I think I am likely to develop AU as well. It was hard for me to decide not to get injections because even though I'm confident in my decision, other people act like I'm not even trying to grow my hair back, like I quit, or like I'm not doing what's best for my health. It's hard to face so much judgement! I've had to be truly self-confident about my choices and my looks.
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I completely understand the judgement for not getting treatment! My mom and a couple other people in my family always say things like "I hate to see you give up" whenever I bring up the prospect of stopping treatments. I think that they are still under the impression that if my hair grows back it won't fall out again and I won't have alopecia anymore. I keep trying to explain that my hair will most likely fall out again at some point even if it does come back. I guess they just don't understand that alopecia is life-long, an even if hair does come back it can always fall out again. I hope that the people in your life will be less judgemental in the future and learn to respect your decision! I think it may just take more time for people who have never dealt with the condition to really understand that treatments are not a cure and are ultimately a choice.
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Agreed, this is all really new and I think they'll take some time. Maybe some people will never understand, and that's ok too.
One thing doctors need to hear more often "This is my life, my body, my hair, my choice!"
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The judging and the unknown is very hard for me. It has only been a year since I was diagnosed with AU. it's very frustrating! i still get frustrated. I have a good support system here with my family and friends, but they don't really understand. When i get down, i start looking online to read other stories, hoping to find one that's similar to my own. It def seems everyone's story is different. I didn't respond to much treatment, except to Sulphasalazine pills. But regrowth is spotty on my scalp, i did get my eyebrows back tho! the texture is different, and it's definitely not the same color or look anything like my hair did before.. i 've also been considering stopping the pills and just being me.
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Miss.heatherl,
Yeah I think that everyone's story is most definitely different. It is such an unpredictable condition an everyone seems to respond differently to different treatments which makes it extremely difficult to decide what to do. I've been going back and forth constantly about whether I should do treatment or not, and it's hard because I feel like both options are unpredictable. Best of luck to you! This year has definitely been the hardest of my life (I've cried so much over my hair) and I'm hoping that things will get better from here for everyone with this condition!
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I have a friend who told me "You are so much more than your hair!" That was a real turning point for me. I value my health so much more than my hair lol I can still do everything I did before I lost my hair, so I don't really agree with treatments that put my health at risk. It sounds as if many people on this thread feel the same. Good luck to you too, Dayna!!! This is definitely a journey of self reflection, if nothing else lol
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IMHO the treatments are not worth the health risk. I've had AU for 50 years and found that as soon as I stopped the treatments, my hair fell out. And I gained an incredible amount of weight in the process. Have your brows and eyelids tattooed (by a reputable establishment) and learn how to glue on false lashes. I find these are a safer alternative than the drugs.
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Permalink Reply by Dr. Hina on
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Hello Dayna, I completely agree that your alopecia has progressed a bit but that doesn't mean it is not curable . It is curable and not by painful means. I am uploading few before after pictures of my patient taken after every six months.
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Hello , The treatment is a non -invasive natural therapy. We have an individualistic approach to each and every case even if the presentation of the problem is same i.e no two Alopecia areata or ophiasis or transient alopecia cases are treated by same combination . That's because though the symptoms are same but the triggering factor varies in every case. As we know Alopecia is an idiopathic problem ,the cause is not known , but the triggering factors like ,extreme stress , hormonal changes, thyroid imbalance , over use of certain medication , prolonged illness , local skin ailments, vaccines , exposure to chemicals etc are known . These factors distinguish every case . A generalised approach therefore fails to bring same result in all cases. For further details you can contact me through email. Below I am uploading pictures of my patient who had severe side effects of certain chemicals used for treating alopecia and the other picture is 7 months after my treatment.
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