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People who have refused treatment
I was diagnosed, with Alopecia Areata, a couple of weeks ago. I saw a dermatologist who prescribed steroid cream, followed by injections if necessary. I then saw my primary physician who recommended the same course of action. I, however, don't want treatment. I can't quite explain why, but it doesn't feel like the right decision.
My primary has Alopecia patients who experience regrowth from treatment and who get steroid injections for each new/reoccurring bald spot. I don't feel that reoccurring steroid use, that doesn't treat the cause, is something I want to participate in. I normally don't go against my physician's opinion, but it feel like I'm being pressed into treatment.
I hope that some of you may have refused treatment. If so, I would appreciate you sharing your decision and experience with me.
Replies to This Discussion
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Permalink Reply by Tiff on
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I refused treatment because the dermatologist barely looked at my scalp and when I asked her what type of alopecia I had (scarring or androgenic), her response was that it could be both. Then, she tried to sell me on painful scalp injections which I told her my mom had and they made her scalp concave (and her hair never grew back). The Doctor's response for that was that it would only last a year. Who wants a scalp that is sunken in for a year. It is my understanding that if you have androgenic or scarring alopecia that steroid scalp injections won't work so I felt like she was just going to be doing that for nothing. She wouldn't even do a biopsy. I made the decision to accept this and do what I can (scarves, wigs,) to make myself feel pretty. Acceptance is so much more freeing emotionally for me then the ups and downs of trying different things and not having them work. We put too much into hair (especially in the black community) and I just refuse to be defined by my hair or lack thereof. I do have a prescription for a steroid foam with unlimited refills but I never use it because my condition is cosmetic and the drugs might make other things happen. I don't think steroid use long term is a good idea. Acceptance isn't easy but once you can come to that place, there is so much less stress. Without my faith and meeting others going through the same thing, I would have had a breakdown already.
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Permalink Reply by dianna on
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It is very hard for someone to lose the hair special womans.i start to lose my hair and im so upset.
i use everything to safe my hair but its not ease.
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Well, injections actually do work for some. It's actually the second treatment options after cremes. The weird thing for me was that when I had a spot if it was injected it would grow back. It would only spread if there were multiple spots left untreated so injections worked fine for quite some time.
My advice for anyone is just to use the treatment or whatever treatment the doc says for 6 months or however long and see if it works. DPCP (a last resort treatment) actually ended up working for me and I was hugely skeptical it would work. My derm was cool about it. He said he has seen it work but it might not work and it may relapse. I never saw results until like month 3 and then it started growing in thick like a bunch of weeds. It was funny because I just thought I always had thin facial hair and even that came in thick like a carpet. Most people would have written off the treatment early but I'm happy I stuck with it. Is my hair going to fall out again? Maybe? Probably? but I am glad I stuck with the treatment.
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Permalink Reply by Cindie on
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I love your attitude, Tiff, and your statement, "we put too much into hair (especially in the black community). So true!
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Permalink Reply by Sierra D on
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It really does have to be up to you on the choice... When I was first diagnosed, I got an injection. It was growing back within a couple of days. The second spot, nothing ever happened. I ended up losing it all anyway. It has grown back and is falling out all over again. My doctor told me he could give me a 3 month course of steroids, but I would not recognize myself afterwards. It doesn't go well with your body. Bottom line is, AA is going to do what it is going to do, I think regardless of what we do to stop it. So if you choose to go against treatment, I see no harm in that. It's your body... your choice. Just wish it was our choice not to lose it in the first place! Good luck to you.
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I applaud you for your decision. I have a similar situation. I was diagnosed, with Alopecia Areata in January and in my case was most likely triggered by the flu shot a couple months prior. The first doctor gave me the kenalog cream which I never used. I saw a dermatologist about a month later who basically gave me 2 options - 1) Shots 2)Watch and Wait. I chose to watch and wait. Ten years ago, I was on a corticosteroid for asthma - and although it was very effective for my asthma, it wasn't without some serious side effects - some that you don't find out about until years later. So even though now I'm pretty much back at 100% health wise, when the doc mentioned steroid shots, a little voice told me "No Way!" Now I'm quite sure that the steroids would be quite effective but my guess just like the corticosteroid for asthma, the benefit is only a temporary surface effect. Once stopped, the symptoms return and you keep the steroid damage as a parting gift. Today I got my asthma under control using natural methods with no side effects and I feel great. For that same reason I turned down the shots. Experience is a great teacher. Like you, my goal is to try and learn about this disorder and deal with it in a natural way. If setbacks occur (and they will), then so be it. Yeah, it sucks losing your hair but I think your overall health is infinitely more important than your hair and ultimately your health will improve your condition - NOT steroids! As for me, the original patch has expanded somewhat but there is hair growing in it (can barely see it and feels like peach fuzz). It's really weird - it's almost like baby hair. Oh well this is new to me. Anyway, good luck and I wish you the very best on your journey.
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I took the steroid cream, didn't work, then was offered anxiety tablets, then I knew I had to find out what was happening to me! Happy to say, my hairs growing back now after I lost prob 80% and its lovelier than ever and its brown not grey! No steroid injections!
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Permalink Reply by abunt on
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Hi LC,
I was diagnosed three years ago. I've had a treatment in the hospital. But there is no result.
When I decided that I do no treatment. For I was treatment in the hospital, I have medicines from a men, but that wasn't too a good result. Now I haven't treatment or medicines. I think it is also good.
I understand your choice.
(I am sorry for my English,I am from Netherlands, and I speak not so good English)
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Permalink Reply by John J Steffen on
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Hi
My name is John I was diagnosed with AA 20 years ago and did the treatment with steroids and cream. simply they didn't work.. So I decided to shave my head. been totally bald for since... I know that for women this isn't the best option. I have found that most women get wigs. over time you will get used to it and your true friends won't care one bit if you're missing hair.. Do what ever makes you feel good. I know the people who are doing research need a control group (those who don't treat there AA) just be confident in yourself and your true friends. I will tell you this from a man's perspective If you take the focus off your head and make it on your eyes and your smile we wont notice the AA until you want to talk about it .... All the best john
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Permalink Reply by Britt on
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After being diagnosed this summer (2014) I was in complete shock and didn't know what to do nor did I have any knowledge on treatment options and long term/short term effects. My derm basically told me that if I were her daughter, she would tell me to do the steroid injections, no doubt about it. I was skeptical so I felt like I had to try something but wasn't quite ready for the injections, so I tried the topical steroid. Well it gave me nothing but an itchy, dry, red, inflamed scalp. Not so fun. So I stopped and took the more wholistic approach and did an elimination diet for 3 weeks to flush out my system. I decided against steroid injections and topical steroid treatment because I came to the realization that I needed to think about the underlying cause of why this happened and knew that I needed to put GOOD stuff in my body and detox the bad. By putting a steroid in my body was leading me to think that that would only cause more problems down the road. These are not the kinds of decisions I thought I would be making at 24 yrs old, yikes!
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