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 steve.persson@utcras.com on
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Reply by Steve January 5th, 2017
Everyone Affected by this Auto Immune Disease,
I have tried every cure possible from Acupuncture, Prescribed Scalp Applications, Cortisone Injections, Holy Water and Ultraviolet Treatments. I have spent a Fortune on every Treatment Know to Medical and Non Medical Practitioners with out Success.
I am very sorry for all the Young Women and Men that have this disease and I sympathize with their frustration & agony experienced everyday. The World can be a cruel place for anyone that does not match up to the stereo types of what we are suppose to look like in this world....especially with young girls & boys in elementary school or Junior High.
There is far great depth to each of you than worrying & concern about your hair.....you are all healthy girls, women, boys & men that have many more attributes than just hair. You will all accomplish in life what you push yourselves to accomplish with or without hair. You will achieve your educational objectives, pursue the ambitions set for a career, attain success in your financial affairs and marry the person of your choice with or without hair.......it is all up to you!!!!!!!
Forget about your hair and draw upon your inter strengths, intelligence and personality to overcome not having hair. We are fortunate because you all have your sight & all other facilities....you are only handicapped because of the limitations you place upon yourselves.
Please have strength and pursue your dreams in life as I have done without hair....God Bless You All and Live Your Lives The Way You Want With or Without Hair !!!
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Permalink Reply by Return_life on
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not 100% true. not even close. but it is a good message, strong motivation.
attain success in financial affairs? I will agree it is not impossible to be rich with AU but if you think it is the same it means you are delusional. Doing interviews being AU depending on the industry can be a complete deal breaker.
Marry the person of your choice? lol give me a break. Dating can be complicated with a head full of hair, so imagine a man without eyebrows etc...
without any exaggeration 80% of young couples I know met their partner on dating sites. same for singles, they meet online. put a AU face on a site and see for yourself...
bottom line you can attain things in life and you need to face multiple challenges, having AU makes the challenge 10 times harder.
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Isolation from the world when u have AU is very common... I would even say it is completely normal.
this site is the only place on Internet where we can see other alopecians. let's be 100% honest between us, no need to lie. we know already how hard it is. it's devastating.
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You are absolutely correct in your
Statement that having AU makes things more
Difficult. It not impossible!!!
I might remind You that John Rockefeller was AU from birth and became one of the wealthestmenin the world with Standard Oil Company development & stock holdings......
Please put things into perspective & proper sequence
In your life!!! I You are going rely only on your picture in a singles
Advertisement page to Achieve Your Objectives in Life...
You are Correct in Yoir Statement that "It Will Not Work"!!!
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let ME correct you... John Rockefeller got AU around his 40s-50s... he got rich before. and secondly he started wearing wigs.
1) we are in 2017. as a man... wearing a wig? not for me. on the other hand I think it looks very good on woman.
2) Now take the time to read before u comment. I never said I will rely on a picture on a single advertisement page. I said this is the the trend now. this is what is popular. and as far as I am concerned doing popular things is fun, that's probably also why it is popular.
3) but maybe deep down u are right... maybe i am exagerating all this. the morale of AU people is so high, I mean they shouldn't even be sad, and even if they are they just have to say bald is beautiful and everything will be okay. the whole world specially western culture promotes looks, aesthetics, etc but it's all bullcrap because Steve Persson said to put things in perspective.
inb4 someone with AU start saying "Hey you are wrong my spouse loves and support me and I think I am sexy" yeah yeah... me too... but u forgot to say the part when u cried several times during the day because of the way u look eyebrowless eyelashless hairless.
now having said that... stay strong, because our life ain't easy but it could be way worse... being blind for example, life can be a real B**** for some!
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Permalink Reply by Momtoalopecia on
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If the hair follicles are still alive there are products out there that could potentially help. My son has alopecia and took injections as well. Now he never totally list all of his hair. He had huge patches that would run into each other but he still has some hair. His refuge was a sticking cap year round. When he was in high school o would have to get special permission for him to wear it. He had a severe bout with it in college. The more hair he lost the more stressed he got and the more hair he lost again. It was a terrible cycle. I came across some products called Monat which are a line of hair care products. For him.... it was the answer. He had been injection free for over a year. The hair follicles HAVE to still be alive for it to work. I've talked about Monat on this site before and got chastised for advertising. To be open and honest.... yes I do sell the products because they can't be bought in stores and for my son it was the right product at the right time. He was able to get rid of the stocking cap (although now it's a fashion). He still occasionally has outbreaks brought on by stress but he hasn't had anymore patches. He maintains. He has more confidence which helps the stress which helps his hair stay where it's supposed to. I had alopecia when I was young so I had a taste of what he was going through. Taking treatments is def a personal decision.
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Permalink Reply by Rachel in WV on
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I started with alopecia areata when I was 12 years old. It would come and go so treatment was a great option because the patches of hair I had lost would come back after the injections. Fast forward 30+ years and I have stopped all treatment due to non growth and pain. I definitely agree that treatment is a personal decision. I am happy with the decisions I made over my life regarding my alopecia treatment. In the last year, I have lost all of my body hair. It has been emotional dealing with that but am gaining more and more confidence with every day. I did feel very odd without eyebrows so I had them tattooed on almost a year ago and am very happy with the results. I don't have to worry about penciling them in daily and having them wash off on a hot day.
Hugs and prayers for your journey with alopecia! :-)
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Hi Dayna,
There is NO MAGIC CURE for alopecia but a total change that you want to bring in your total lifestyle and strengthen your immune system by switching to healthy habits and practices.
Alopeica means ur immune system works against you and unknowingly attacks heatlhy cells.
So u need to strenghten ur immune system by starting from the scratch.
Here are the steps our ancient Ayurveda advises(As told by Ayurvedic practitioner).
These are safe and no side-effects.
I am reproducing below exactly what the ayurvedic doctor said :
Please follow below instructions:1. Chyawanprash - one small spoon in the morning, before food, with milk / tea / coffee / water. Available here -http://amzn.to/1cNYH0r
2. Amla capsule - 1 capsule 2 times a day after food - http://amzn.to/1aojx5c
If you live in a country where fresh amla/nellikaai/india gooseberry is available, please take one a day .(eat it raw ot make a juice mixing with water and little honey).
If fresh amla not available, try if u can get nellikai powder atleast.
3. Bhringaraj capsule - 1 capsule at night, after food. http://amzn.to/1aTL4L2
4. Use Neelibhringadi hair oil - http://amzn.to/1bupZE0 - Apply this to your hair, 10 minutes before taking bath
Other advice:
1.While going out, try to cover your hair with cap, to prevent dust and sun rays.
2. Use a soft comb.
3.Drink good amount of water everyday.
4.Eat lots of fresh fruits and veggies.Avoid alcohol,smoking,caffeine, working late hours at nite,taking too much stress...etc..Avoid Pizza, cookies, oily foods,sugary foods like Coke,Pepsi,etc.Take a balanced meal.Try to eat as much home cooked food.Say NO to fast food.
5. Practice pranayama for 10 minutes everyday- easyayurveda.com/2010/08/28/how-to-do-pranayama-a-simple-pranayama-... . Join a yoga class and continue with yoga for minimal 6 months to see a change.
6. Eat your breakfast , lunch and dinner at a particular time everyday.Don ever skip ur breakfast.Your body will get used to proper eating routine and will release hormones accordingly.If u take dinner today at 8.00P.M , you have to continue taking dinner at 8.00P.M everyday to help your body with the routine.
7. Sleep for at least 7 hours at night.
8.Avoid taking strong antibiotics which will kill the good bacteria living in your gut.Dring lots of buttermilk.Increase intake of fermented foods which has lots of probiotics.
9.Apply onion juice on ur scalp and massage with the juice.Checkk link below.
http://www.healthyandnaturalworld.com/how-to-make-onion-juice-for-h...
10.All of a sudden did u have a fever or something where you were on high medication? Just think.
P.S: I hope in my humblest effort of putting my post here ,I will at least help few of my brothers and sisters in the world, suffering with Alopecia.
Follow above steps and be patient to gradually see improvement.
Also cut a ginger root and apply the ginger root tip on ur scalp.I am sure hair regrowth will happen.I believe it because it works for my sister.
Bottomline: A balanced diet , Yoga, Pranayam and positive mind will definitely show some improvement.
You have to work your solution form deep within .Undertsand what is the roort cause of Alopecia ?Why immune cells are attacked?Are you having adequate sleep?Are you having a healthy food and lifestyle?Find out answers for these questions .The solution for all out problms lies with in us.
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