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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 Lori Black on
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Hi! Good question! I have discovered that this road with Alopecia is as long or short as we want it to be. I have had AA, now AU for 32 years. Treatments for 5 yrs as a teen, and hated the pain, the time and all of it! It doesn't sound like they are much more effective now. Constant th and fall out (shots st right into the base of my neck, ouch!) creams, ointments,at one point, wearing saran wrap on my head! Not productive enough for all the hassle. 16 yrs ago, thought about trying again. Immune suppression is my only real option. So, I opted to live with it. No treatments, drawing eyebrows on everyday, new hair do (wig) a couple times a year and live my life! I have/had that accepted me the way I am (first hubs passed away), I have birthed 4 very healthy sons, and choose to accept myself. Until I accepted myself, I wasn't able to project a healthy self image. We make others unsure of how to approach us when we don't face our own reality. I am healthy, so further treatments could have made me susceptible to illness but with hair! No contest which choice to make! Love yourself, treatments or not and be happy being you!
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Permalink Reply by Dorothy G. on
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Hi Dayna,
Your decision to stop or continue treatments is a personal one.Like you, I did the shots in my head for two years. They helped with regrowth quite a bit. When the fist patch I had came back a second time I stopped treatments. I didn't think it was worth it any longer.
If I had known the possible consequences of the corticosteroid shots, I would have not even done them.
This year I went for bone density test and was diagnosed with osteopenia - I was losing mass in my bones. I am now on Fosomax to help with that. Four years from now my bone density should be back to normal levels.
The corticosteroid shots and my daily inhaler use for asthma may have been contributing factors for the osteopenia. If I had known at the beginning of treatment that my bones could have been messed up, I would have said, "No thanks."
Good luck to you!
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Permalink Reply by Jan on
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I too am relatively new to AA, 4 months. From reading discussions I feel I am lucky to have the Ophiasis type. I have a lot of hair so it covers the missing hair band that goes from one ear in large patches to the other and my bangs look like they are wispy. I only had 2 treatments and my dr. only gave me injections in the totally bald areas. One large area has sparce growth but since I am finding more "holes" I have decided to not get anymore treatment. my New Year's resolution is to try not to think about all the hair that is continuing to fall out. I say try because I am still at the check the areas every night to see what spots have grown or formed. I dread washing my hair because of all the hair that comes out. Thank you for everyone for giving newbies like me courage. Who would have thought this would happen in my early 60's?
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Permalink Reply by Momtoalopecia on
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Jan, please look into a product called Monat. Its a shampoo made of essential oils so it doesn't have toxins in it. It's not a medication but simply replaces your existing shampoo/conditioner. I've seen many success stories including my son's. He hasn't had to have a steroid injection since he started the products. I can send you more info if you would like. My email is jbenda2014@outlook.com. It may not work for everyone but for him it was the right product. Thank you!
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I have used Monat products but had to quit as they grew so much hair, I just couldn't afford the cost of haircuts every week.
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Wow that's quite a testimony though. Monat goes in and makes the hair follicles healthy so it will stimulate new hair growth. After my son used it for about 6 months or so he had so much hair. He was really nervous about getting a "good" haircut though because he was still afraid his hair was going to start falling out again. He is now 15 months post injections and is feeling confident enough to keep his hairstyle up.
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Thank you for sharing. I truly understand your frustration. I have gone through the same treatments you have described only to see my regrowth fall out again. My doctor prescribed various oral medications only to cause more significant hair loss and side effects. I now have lost all my hair and have asked the same question. I have come to the conclusion that my being healthy without side effects was more important than trying to regrow thin hair that would never be as beautiful as my original head of hair. I have embraced wearing beautiful wigs, feeling good about myself, and getting back to enjoying my life. Everyone has a different hair loss journey and when the time is right you will find the balance and acceptance.
After 3 years of pain, sorrow, despair, I've decide to get back to living, loving, and accepting who I am today.
I hope this helps to provide some direction for you and your journey.
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Permalink Reply by Dayna on
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Thank you for the reply! This post does really help! I think that I am going to stop treatments! I think that if my hair is going to grow back, I would prefer that it did it on its own instead of being forced to by toxic treatments! I really appreciate this post, and it's awesome to hear that you have been able to accept yourself for who you are! I'm striving right now to get to that point!
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God gives me the strength and blessing to keep my head up and to be proud of who I am. It took 3 years to get to this point. And j stopped treatment 1 year ago. Good luck
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good for you! What's right for each person is different, be confident walking your own path.
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Permalink Reply by Brandwood Clinic on
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I wonder if Scalp Micropigmentation might be an option for you? It is a question of whether you feel comfortable wearing the appearance of hair at it's shortest length but it does make it look like a choice rather than circumstance.
As you're young it may be something you'd be comfortable with and may suit you, worth a look at least.
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I am not a big fan of micropigmentation but for some guys I guess it is a solution.
but for woman I find wigs to be so nice, depend which one but some look so realistic that I don't see why they would not choose this path!
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