Alopecia World
www.alopeciaworld.com
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
-
Permalink Reply by Pamela on
-
I have had AU for 30 years. No hair no place. It did come back a couple of times, just to fall out again. Forget the treatments. If, and that is a big If you were to have regrowth, it will just fall out again when you stop them. Plus they are expensive and no insurance will pay. I would say, just give it time, It may come back on it's own and stick around for awhile. Or it may never come back. I had my eye brows tattooed and boy was that painful, plus, it fades out. I also had eye liner tattooed. That hurt even worse. Again, very expensive. My advise is try and live with it and get a Freedom wig. Expensive? You bet. But you are young and will justify the price over time. Hope this helps.
-
Permalink Reply by Dayna on
-
Thank you for your reply! I am definitely leaning towards stopping treatment and getting a nice wig. If you don't mind me asking, was your eyebrow tattoo using the microblading technique or a different form of eyebrow tattoo? I've been thinking about getting my eyebrows microbladed but I wasn't sure how it would look on me because I don't have any eyebrow hair. I'm saving up right now for a nice wig and possibly microblading, but it will probably take a while to save up because I am in college right now.
-
-
I had my eyebrows tattooed using microblading. It wasn't that painful having them done and since having them done last April, with a follow up this September, no one can tell I have no hair at all on my brows. In fact, one of my kids came home for Christmas break and told me she thought my eyebrows looked great. She thought I was continuing injections and had hair on my brows. I told her to look closer and then told her they were microbladed and she couldn't believe it.
-
-
That's awesome to hear! The pictures I've seen of microblading look really awesome, and it would be so nice to not have to draw on my eyebrows every morning! Thank you for sharing your experience on microblading!
-
-
I did microblading!! Love the results, get so many compliments on my eyebrows.
-
-
Hello, I have been interested in microblading for a while. How did you research the clinic who did the procedure to ensure you found the right place. I live in Chicago and I am sure there is a reputable place, but feeling nervous about committing. Any criteria or critical questions/answers that helped you know you were getting the best result possible would be very much appreciative!
-
-
hi Dayna.
you are 19 and your alopecia is looking pretty severe... I mean u say that u lost eyebrows and major thinning. I don't want to sound the alarm but u might one day develop AU. if you do not know what is AU then do your homework.
to answer your question we would need to know where do you live, because treatment differs from country to country.
personally I would avoid cortisone for a long term. I find it messes you up big time.
it also all depends on your values. some guys and girls your age would think that Hair is Life.
I think like all other autoimmune disease if you cannot control it you should start a biologic. xeljanz is a popular one and pretty easy now to get it prescribe. efficacy is around 75% and pretty good on patients recently diagnosed.
you are young and having AU can affect negatively your life. yeah yeah I heard the alopecia made me stronger... but if you have the choice not to deal with this, for me it would be a no brainer.
on the other hand, girls have many options because wigs can look very natural and make up can make miracle. I personally know 2 girls with a wig and honestly they both are very attractive. unfortunately one of them has taken so much cortisone that it impacted her shape in a bad way.
whatever u do my dear, stay strong!
-
-
Thank you for your reply! I am aware that there is a good chance that I could develop AU at some point. I have recently begun to lose my lashes a couple of weeks ago, and I have also begun to have nail anomalies (pitting and a couple toenails randomly falling off). I have also had eczema my entire life an I read the dermatitis can make your prognosis worse. I live in Arizona so I'm in the US.
I have also heard about the research on Xeljanz, but I know that it is very expensive (I read around $3500 a month) and has some pretty bad potential side effects. The side effects of the treatments are a large part of the reason I'm thinking about stopping treatment all together. I know that not everyone has side effects and for some people it does not negatively affect them, but beside losing my hair I am fortunately healthy, and I don't really like the idea of doing treatments that would compromise my health.
Thank you for your input and support! It helped that you addressed both points of view.
-
Permalink Reply by Tom on
-
I've had AU for 40 years. I tried the prednisone orally and the shots. My eyebrows started to come back and fell out again. My doctor told me if I continued the treatments I would be putting my health at great risk. So I stopped. I've learned over time that it's not the worst thing that could happen. I'm 59 years old and if they came out tomorrow with a cure I would have to know it was safe before even considering it. I'm not so sure I would take it even then.Im me with hair or without. But it makes no sense to end up with some terrible health problems when your healthy now.Take care and God bless.
-
-
Thank you so much for your reply! It is really inspiring to hear that you are able to feel okay with having alopecia! I am really trying to accept that I have alopecia, and I hope that one day I will be able to not have to stress about it so much. I'm hoping that it will get a lot better over time.
-
-
Amen Tom! I agree that being healthy and avoiding long term Health problems from treatments has worked for me. It could be worst. Enjoying life wearing a wig IS a safe option. Thank you for sharing.
-
-
I had that same experience of waking up with one eyebrow! Wow that brought back memories.
When the doctor offered me shots she also told me that I have scarring so none of the hair that's already gone would come back. She also told me I'd have to come in for shots within 2 days of fallout before scarring develops. So that alone made me NOT want to try to make the mad dash to the doctor for painful injections that would help me have half a head of hair.... No thank you.
What really re-affirmed my decision to not do the shots was this: Steroid side-effects
But, the cause and degree of everyone's hair loss is quite different. If the shots are working for you then keep it up. Lots of people here have had success and remissions with the steroids. If you feel it's a losing battle then saying "no more" is a very empowering way to take control.
© 2024 Created by Alopecia World.
Powered by
