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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 Lauren on
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When I first got alopecia I was recommended the same treatment as you. I used the steroid cream for a year or two and it seemed to help a little but as you said before, it doesn't help the cause so hair just kept falling out. My doctor continued to recommend injections, but after hearing some other people's experiences with them, I refused. One thing that is safe and did help was using Nioxin, it's a shampoo and conditioner system that is designed to stimulate hair growth. It was much safer than steroids and can replace your normal shampoo and conditioner. It helped me a lot, hopefully it can help you as well :)
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Permalink Reply by LC on
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My doctor did recommend a shampoo that is over the counter, and I am willing to try that. I hope that it will improve my bald spot. Thanks for your input.
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Permalink Reply by Debbi Fuller on
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I tried the steroid injections and anthralin cream for about 6 months, the alopecia kept on going and I stopped all treatment. If I had it to do over again, I'd never have even bothered. I think it's going to do what it's going to do. Going to the doctor all the time was time-consuming, annoying and ultimately fruitless. I'm a happy AU now for over 25 years. Love my 'Freedom hair' when I want to wear it and love NOT having hair when I don't! Whatever treatment you try, they all have side effects and if the alopecia hasn't decided to shut itself off, you just lose it all anyway when you stop the treatments. I don't like taking unnecessary stuff and steroids are no exception. And in response to being happy and then your hair follows - no, it doesn't. I'm one VERY happy camper and I've been bald now for over 25 years! The trick is to be happy with or without hair!
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Permalink Reply by Regina Stevenson on
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I like the way you think!!! Your last statement is a must!
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My name is Janice and i am 43 years old. I got Alopecia when I was in the 4th grade. Started with the injections for years then my hair grew back. Then my mom passed away and I began lossing all my hair I kept going for the injections and using the creams but after awhile the injections became too much especially when I wasn't seeing any hair hrowth.
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Permalink Reply by Angelica on
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It's different for everyone, it can help stimulate hair growth back, or it could not. I've had alopecia for 20 years and tried it all, taking medication will not get to the root of the problem. You need to ask "why is my ammunition system attacking itself?" It took until recent for me to figure out why I was loosing my hair. It was gluten and processed food but that does not mean it will be the same for you. A good start point would be to go to a holistic doctor. Find someone in your area that you have good feedback on. What they do is get to the root of the problem, not just try and mask it or give you steroids. All the steroids did to me is make me agitated and cranky with results...until I stopped taking it. When it comes to alopecia doctors are not trained to heal you, just to push medication. Good for you for refusing! Also try and notice how stressful your life is. Stress can trigger hair loss also.
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Hello, I'm Regina. I'm a 41 year old mother of two, retired military and when I was diagnosed with alopecia after 45% of my hair had fallen out, I got the cream and injection treatment plan as well and I refused flat out. I asked a bunch of questions and the fact that the treatment would only POSSIBLY help the symptoms but was not a treatment for the cause, it didn't make logical sense to put myself throught that. I cut my hair low to where the patches weren't as noticable and let nature take its course. It took a while but my hair grew back. A friend of mine that also has alopecia recommended this fragrance free garlic shampoo and amazing enough my hair grew back faster after I tried it. I use it all the time now and haven't had a bout of severe hair loss for about 6 months. It isn't a cure but it helped.
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Thanks for sharing your experience, Regina. It seems that we have similar thoughts about the treatment options. It's helpful to hear about other people who refused treatment.
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Permalink Reply by Sybil on
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My daughter has alopeica. It started when she was 2 1/2 and of course we tried everything. I soon realized nothing was working. We DID try a steroid cream but it only burned her scalp so badly that it bled. That's when I said NO MORE!
She will be 8 next month and we decided that after puberty she can try whatever she likes. She is happy and actually offered to shave my head last summer when it was so terribly hot!
We had joined a support group and heard nothing but terrible things about steroids and I wasn't going to try it anyway.
This is your decision. We can give you our thoughts and our stories but the ultimate decision is yours.
Doctors will try to give you whatever you want, but do the research first.
Sybil...Olivia's mom
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Permalink Reply by Dorothy on
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I got AU 40 almost 41 years ago I went thru the injections, not one hair of regrowth. Each person is different, I went to doctor after doctor trying just to get a diagnosis. (Not so easy back then). So it depends on what your state of mind is, are you willing to just wait and see if nature brings regrowth or do you want to go the hassle of the injections? Either one it is a risk because there is NO guarantee either way. I may not have completely accepted my AU, but I finally had to stop chasing something that was not going to happen, I self diagnosed, then confirmed with a doctor. In my case up to that moment NOT ONE doctor had ever used the term Alopecia, Alopecial Universalis, or autoimmune disorder/disease. So you are more fortuneate that you know what is wrong even if we never know the WHY of it all.
I guess what I am trying to say is you have to decide, if you do nothing and no regrowth comes, can you live with that. If you can, and are ok with that, then I would not waste my time or money chasing after something that may or may not "fix" the problem. Even if it does, it may be only temporary, there are no guarantees.
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Permalink Reply by Shannon on
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Hi! I'm Shannon Cox, 39, mother of 5. When diagnosed at age 14 and shots were infrequent and small, I think the cream and injections worked to promote hair growth. However during my college years hair loss became much heavier and then Dr amped up regime with prednisone. Long story short, they caused terrible, long term side effects and health problems for me and I wish I had never started them. I was terrified at that age, there was no internet, I didn't know what to do other than listen to my Dr. Since then I lost all hair once, had it come back with the help of alternative medicine, then 8 years ago I lost it all again and it hasn't grown back. I've been working on my over all health in a very natural manner and trying all different kinds of things for my hair but nothing on the spectrum has helped. I'm OK with it. My health is now good and my life is very happy and full. But that is a discussion for another day. Just wanted to give my 2 cents that if I could do it again I would have never touched a steroid.
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Thank you for sharing your experience. Side effects are, of course, a concern of mine. I was thinking about how awful it would be to let myself be swayed into treatment, only to experience negative effects. Before being diagnosed with alopecia, I began improving my health and going toward a more natural approach at life. I'd like to continue to focus on my health, rather than use treatments that could be harmful.
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