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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 information about the discounted latisse! My dermatologist keeps recommending it to me, but I couldn't afford spending $200/month! I will look into the Canada mail order!
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Permalink Reply by kim on
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Crystal, I lost all my hair, eyelashes and eyebrows on Sept. 10. My dermatologist wants to start me on Xeljanz. Do you recommend it? Is it safe?
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Permalink Reply by MariaR. on
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In my opinion, treatments are worth it, and if they are not worth it anymore, then stop! Here is my experience: I experienced total hair loss (AT, where you lose all your scalp hair) at age 3. With treatments, I regrew it at 5. I continued treatments throughout all of my teens and twenties, and I had hair the entire time. I always had AA (the bald spots), and occasionally they were very stubborn and also affected the brows and lashes, but overall, I had hair. I never wore a wig during that time, and I could always hide it. I'm personally very grateful for the years of having hair, and I am grateful for the doctors who would agree to continue treating it (I frequently moved, and thus I was always looking for new doctors--not all would agree to treat me, particularly not as aggressively as I wanted, and I am truly grateful to those that would). In my late twenties, the disease became much more aggressive, and I went on even more aggressive treatments. Again, I am grateful for the doctors who were willing to try. In my early thirties, I had a terrible few weeks wherein I lost all of my hair--scalp, brows, lashes, etc. I went on high oral steroids, injections, and methotrexate, and I was able to regrow all of it twice. Every time I started to taper off the oral steroids, though, it fell out again. After two times of this, I decided to stop treatments, particularly since I wanted to try to have a baby. For me, that was when I had had enough--when I knew that I couldn't taper off the oral steroids, and I felt as if I had given it enough chances to "hold" on its own. I'm really grateful that I had a supportive doctor who allowed me to make the call when enough was enough. Also, I would like to say that, for me, buying a wig I was truly happy with also had a huge difference in allowing me to say "enough." I'm on my third wig (it's a Freedom Wig), and it truly has made me so much more comfortable. I'm now 36, and I have total AU. I'm about to give birth to my first child, and I'm okay with having AU. However, after I decide that I am done having babies, I may try one or two more times of aggressive treatment to see if my hair can come back and hold on its own. After experiencing total scalp loss at three and being written off by doctors, I'm a believer in miracles. But I'm also finally feeling okay with being bald, too. It really is your call, and don't let anyone else tell you how you should feel.
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Maybe after you have your child, the hair will come back. Stress took mine, so, maybe stress of childbirth will bring yours back.
Until they hit the teens. lol
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Permalink Reply by Victoria Panaccione on
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ha ha. Love this. And anyone who says teenagers don't drive you crazy, don't believe them. if I hadn't already lost my hair to alopecia I would have anyway during this time!
My identical twin sister lost all of her hair in her last trimester of her 3rd pregancy. I started losing my hair at age 7 and didn't lose it all until I was 12. Steroids gave me a whole head of hair at age 15 for an entire summer for which I was extremely gateful but then lost it all went I had to taper down by the Fall. My younger sister lost all of her hair at age 16 in a 3 weeks but then grew it back for a couple of years. Now all three of us are totalis and wear freedom hair. It's nice that we have each other. Can you imagine what it was like in my household with two teenagers with alopecia?
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@ MariaR. That's really inspiring, because you've come to terms with hair loss, hair growth, treatment, and ceasing treatment. I really admire how you roll with it.
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Permalink Reply by Momtoalopecia on
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HI, i myself struggled with alopecia when i was young. I past the fine trait on to my son. He has struggled with it since he was in junior high (now he is 25). He wore a stocking cap for many years all year long. It effected him tremendously.
Before I go in to this next part I want to say that I have a business and yes I sell what I am going to tell you about. I have been been beaten up on this website from some because they think my only goal is to make money. That is not true. I have lived with alopecia and its effects for almost 30 years. I know what it feels like to take painful injections and then watch my son take the same injections.
Ok now that that is out. In September of 2015 I stumbled across a company called Monat. It is a hair care system that helps people grow back hair and it is made from natural products. I did some research on it and dove in. My son started using it the end of Sept 2015. He had one injection in Oct 2015 and hasn't had to have one since. He uses the shampoo daily just like any shampoo. There have been a few times that he has noticed his hair coming out a little but it grows right back. He never has to wear that old stocking hat again. I am forever grateful for Monat. It has changed my life in soooo many ways. To you young people that are struggling...... I am fortunate that I grew out of it. For my son it may be ongoing. The effects on him have been life altering but he chose to make lemonade out of his lemons. He is now a songwriter along with other things. He has taken this experience and now ministers to others that need help. My prayer is that each and everyone of you take some time to reflect on the awesome things you have in your life. Thank you!
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Actually there are many studies that are free of charge testing new treatments for patients with extensive alopecia areata. Several large studies are conducted for example at Mount Sinai Medical Center in NY, a center that is leading in other inflammatory skin diseases. When participating in trials patients do not pay, and they are reimbursed for their time. There are several agents that are being tested, all directed to molecules that are increased in patients with alopecia, and some showed responses in small reports.
Particularly since wigs do not solve issues as eyebrows and eyelashes, these treatments offered in the trials may provide an avenue for hair regrowth, using treatments that were tested in other skin diseases.
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Hi Dayna,
My son developed AA/AU 2 years ago. He is now 13. He started DNCB a few months later. After a year and a lot of growth, he lost it all again, including eyebrows and lashes. But he decided to keep trying and now he has mostly grown his hair back including lashes and brows (they are not totally full though). It's not thick in the front of back but he is about ready to stop wearing a hat. My point is that DNCB can work but it takes a long time. We know another boy, same age, developed it at the same time, who has had almost the exact experience. If my son gets another spot or starts loosing hair again, he will stop treatment and just be who he is. The 2 years of treatment did givee him time to get comfortable with it all. We do only treat the front and back a couple times a week now though so its not a big deal. Thought this info might be helpful. Good luck!
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Thank you for the information on DNCB! I have noticed regrowth on it, and I am considering continuing it. The only thing is that I have really sensitive skin, and even on a low concentration I'm getting a pretty severe reactions (layers of skin peeling off and getting so itchy I have a hard time sleeping). Did your son have those problems? My dermatologist told me that I seem to be reacting worse than her other patients that were on much higher concentrations. I guess everyone reacts differently. It is good to hear that your son has had success with it, and this information was very helpful! I will definitely keep this in mind when making my decision!
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Katie, How long after your son started DNCB, did he see growth? I am on dcp, but no hair yet (it's almost 12 weeks). I do get the reaction and everything...
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Permalink Reply by Kranthi on
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Hello Dayna,
This is Kranthi age 28. I am suffering from AU from past 8 months. Now I do not have any hair on my complete skin. I am taking Homeopathy treatment, but no result yet. My suggestion is to not go with any medicine which directly act on your immunity like Steroids.
Please stop the treatment with steroids.
Try to change your life style, some times thus might help you.
our body will support hair growth once again.
All the best.
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