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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 Donna on
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Good for you for listening to your inner guidance. I will share a bit of my experience with you....I started losing patches of hair at 12 years old. Started the cream (did nothing) then started on injections (ouch they hurt). Continued with the injections until I was 55 years old. Going through menopause the injections stopped working. Leaving me with a huge area on the back of my head with no hair. The shots were not working any longer so I stopped the injections totally. Within 6 months I had to shave my head because it was so patchy it became hard to hide it. So, then I had a shaved head and the rest of my body hair falls out! Yep....every bit of body hair. Yikes! I had no idea where this was going or when it would end. I was not going back to the dermatologist so I just waited it out. About a year of "no hair" and then the hair on my head started growing once again:) I think my body over dosed on cortisone. It has been 3 years since everything fell out and my hair has grown back in. I will probably never know why and it all remains to be seen how long my hair will stay. I listened to my inner voice telling me to stop the injections and I applaud you for having the courage to do the same. Enjoy life with or without hair.....You go girl!
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Permalink Reply by LC on
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Thank you for your support, Donna. It's really helpful to hear someone support my decision to turn down treatment. It's all very overwhelming still, and I feel that I simply must do what feels right.
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Permalink Reply by terri on
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My daughter has alopecia universalis since age 2 and is now 11. We took her for initial diagnosis and got the cream. Then a visit to John's Hopkins where he gave a foam. The dermatologist told us they can't fix this. Some medicines can work a bit but when you stop the hair falls out again. He also said sometimes the hair grows back on its own and all is unpredictable. We never took her back to a doctor. We never wanted her to feel like there is something wrong with her. She is healthy and never gets sick and she is hilarious, joyful and bald and beautiful and owns her world.
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Thank you for sharing your experience. It is inspiring to hear stories about individuals who have embraced the,selves, with or without hair.
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Permalink Reply by tressah on
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My daughter was diagnosed with AA almost a year ago. She is 6 years old. Her pediatrician wrote a script for a steroids cream and I only used it once on her. I had this overwhelming gut instinct to not use it. I instead did a lot of research and put her on a vitamin d supplement along with some all natural shampoo from the health stoe. Her hair had grew back in a few months and hasn't fell out since. Research as much as possible and we will ne praying for you . God bless you.
Tressah and Hannah
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Permalink Reply by Danielle on
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Hi LC,
I have a hereditary type alopecia so I've been through those treatments and I thought they were evasive and it just didn't work for me. I would suggest seeking an accupuncturist that specializes in hair loss for help. They provide herbal remedies and treatments that also deal with any other areas of your body that may affect your alopecia. In my case, it was inflammation caused by indigestion. Even though it looks painful, it is not. During my treatment, I would actually fall asleep with the needles in and I felt great afterwards.
I hope this helps and please know that you are not alone in your journey.
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I've had AU since I was 27 (I am 68 now) and I have tried it all- injections, creams, VERY high doses of steroids, diets, tranquilizers (for "stress") and here I am, 41 years later, still with AU. After I stopped treatments, I finally accepted that my hair was gone for good and got on with life. Once I accepted myself, a real sense of peace came over me and I have been content with who I am. While I can't tell you not to go the very same route I did, I can tell you that my personal happiness began with acceptance, not medical intervention.
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Thank you for all of your insight. I really appreciate you guys sharing your experiences with me.
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You're right about understanding the root cause. These topical treatments may show improvements but your immune systems is going to keep doing what its trying to do. Like Jung said, what you resist, persists. Like you said, best to try and address the root causes. Here is a great source I found a few months back, I hope it gives you some direction :) http://www.hairlossclinic.com.au/
The internet can be an amazing tool, use it to get as much information as you can and make your own treatment decisions. Seek out different practitioners doing different things, you'll find what you need. At worst youll get healthier! Also, try and get in touch with a psych, Alopecia is a tough gig and friends and family cant always relate or be willing or able to help carry the weight a condition can put on somebody. Good luck
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HI,
I was diagnosed a few years ago. Prior to that I noticed a AA spot and read up and most said it would grow on it's own. One year later it did not, it was then I looked for treatment. Then diagnosed with AA - Dr suggested cream(which I did not use) and set me up with a Dermatologist. It has been about 8 months of injections. The hair grew in spots where the injections were given. Yet that only worked for a few months, then it stopped working and that hair fell out too. When I began the Paleo diet that is when I noticed hair growth in the spot where their had not been for over a year. I did not see this correlation until I have been on strict Paleo now for AutoImmune Disease. Check out the Paleo Approach for Auto Immune Disease. It will teach you so much and how it is so interlinked. I have now hair growth in areas where there has been nothing for over a year. I believe the steroid injections actually created more hair loss around the site of the injection - as my AA spot is double what it was when I had started going to the Dermatologist. But I am happy to say slowly but surely with Paleo Approach it is growing back :) YAY!! -
Disclaimer - This is only my experience, I am not suggesting this will work for everyone. Everyone's body responds differently.
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Thank you for your advice. I am a vegan, but I will still read up on the Paleo diet for autoimmune diseases.
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Why would you hope people to refuse treatment? Just because you lost your hair does not mean that everyone else would like to lose their hair as well. For a lot of people with minor AA steroid injections work. It doesn't matter what you think, you're not a doctor. You're talking about how you feel about something and a doctor is going off of clinical evidence. I understand you yourself refusing treatment, but to try to put that off on other people is not only misdirected it is completely wrong. If someone is suffering from AA or any other type of alopecia, they should be allowed to decided for themselves what options or treatments they can or should get.
That's nice you went with your "gut" feeling, but there are other people out there that would say otherwise. You shouldn't feel the need to speak for them at all.
I lost over 80% of my hair on my scalp and face. I didn't think DPCP would work. My "gut" feeling was to just deal with it and get good at shaving my head. My doctor said to at least give it 6 months and then we can rule out the treatment. You know what happened? Me being cynical ended up getting 95% regrowth. I didn't want to take DPCP and didn't even think it would do anything. It gave me more hair than I ever had. It was expensive and there were growing pains but it worked.
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