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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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Hi Kranthi,
I have completely changed my diet since I got alopecia. I started doing the paleo diet (not AIP) when I first started losing my hair, and I am taking so many supplements (biotin, zinc, iron, fish oil, resveratrol, tumeric, viviscal, vitamin C, L-Lysine, L-Glutamine). I started these in March, and I don't know how much of a difference it has made for me. I didn't really have any regrowth until a couple months into doing the injections and DNCB. Let me know how homeopathy treatment works for you! I was also considering going to see a homeopathic doctor to get a different perspective. Best of luck!
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Permalink Reply by Kranthi on
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Hi Dayan,
Thanks.
I will share my updates if I found any improvement in my condition.
Until March I will continue Homeopathy, after that I am planning to go with Indian Ayurveda treatment.
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Permalink Reply by Dena on
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My daughter developed alopecia areata at 5. We spent a lot of money, time, and pain on treatments that were painful and dangerous and accomplished nothing out of fear that she would lose it all. At 6 she lost it all and developed Alopecia Universalis and we decided to concentrate on her health and confidence. It is really hard in the beginning and we did a lot of stressing on how we were going to reverse this, but I have to admit once we just came to terms with her condition the stress lessened. She chooses to go bald out of comfort and convenience, but when she does wear a wig no one knows. I am sure when she is much older she will be able to wear eyelashes and makeup to disguise it if she chooses, so I don't see any reason to put her health in danger for hair. Life is short and I would hate to see her with life long health problems later in life. It just isn't worth the risk to me. Of course I have always kept the door open if she chooses to go back and seek treatments, but that would have to be her choice and I would definitely go through the risks with her. People have a lot of opinions and love to give advice about how they would handle it, but in the end it is up to the person who is actually going through Alopecia to decide. Do what you feel in heart is best since ultimately you are the person who will have to deal with the long term effects.
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Permalink Reply by Victoria Panaccione on
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This is beautifully written, Dena and from the heart.. If this were to happen to one of my children I would want this type of outlook. thank you for sharing. Vicky
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Thank you Dena for your post! It was really helpful, and it sounds like you are a very supportive parent!
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Permalink Reply by Dawn on
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It's so frustrating! I tried all of the same treatments with zero success. I've been on chloroquine phosphate for 4 years and it works for me. I still get very small bald spots but they grow back quickly.
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Permalink Reply by TrishO8 on
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I Had success with steroids with areas but once it became universalis, I tried dpcp which was working, was like a chemical peel. The success was short lived and I've been bald for 7 years. MY EYEBROWS ARW TATTOOED AND ARE GREAT.I use a lace piece which is glued on my scalp. Every one responds to treatment differently though and it us largely a personal decision.
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Hi Trish, how long after you started dpcp, did you start to see growth? I have been on it for almost 12 weeks; I do get the reaction (even a full body rash), but no sign of growth yet. My derm is very pessimistic and says that is there's no growth by week 12, we should stop.
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Permalink Reply by KFruth on
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I have had Alopecia since I was 8. My parents had me try DNCB and other treatments. They thought they were doing what I wanted and what was best for me. By the time I was 12 I realized it really wasn't worth it. I was missing school and it was painful. I am now 23 healthy and happy. I understand wanting you hair back but at what physical cost. I know mental health is just as important as physical but I believe you are strong enough to mentally overcome the lack of hair, and it seems like that's what you've decided. All I can recommend is to make sure you have a strong support group in college. My college roommates were such a good support system and it really made all the difference. This is your time in life to put yourself out there and figure out who you are. Doing it all without hair will make you stronger.
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Thank you for your reply! This was definitely helpful! I am lucky that I have supportive people in my life right now. I have a boyfriend who has been with me through the whole experience and has been really encouraging me and motivation me to be more social and to live and experience things the way I used to before I had alopecia. I'm hoping that I will get better at not feeling so self conscious about having the condition!
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I'm an 18 year old girl who has had alopecia since I was 6-7 years old. I know your pain. I go through it every day. I've done so many different treatments that I feel like a lab rat. I've recently decided to quit all medicines and injections. I'm planning on getting away or moving so I can transition to a wig, as I don't want it to be obvious. I'm just not ready to go out one day with a completely different hair style in my small town. I have 2 wigs that I got from ebay and wigsbuy.com. it's lace front and Im pretty excited. I just have to learn how to hold them down. I got my eyebrows tattooed a year and a half ago and I'm planning on getting them microbladed as I feel it will boost my esteem more. Good luck, and message me if you have any questions.
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Thank you for your reply and your support! I feel the same way about wearing wigs and feeling like I want to move so that I don't get so many questions about it. Hopefully after I finish college, I'll be able to move and I won't feel so uncomfortable about wearing wigs. I hope that you will also be able to find a place that you feel more comfortable wearing wigs and are able to get your eyebrows microbladed! I wish you the best of luck, and I will definitely message you if I think of anything :) If you need any support with anything, please feel free to message me as well!
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