At what point did you decide to stop treatment for alopecia areata?

When my hair first started falling out I had no clue what was going on, it all happened so fast (hair one month, bald the next) that when I started going to a dermatologist I started doing everything she told me. After speaking to a specialist and personal research I decided that there truly is no point in putting my body through all those drugs. What I had learned is that if your body is going to correct itself it will do that regardless of what treatment method you choose. The fact is that there is no cure and if there was really a treatment that worked for this then there would not be women on this website who have had it there entire lives! My hair did begin to grow back when I was on monthly high doses of prednisone however it fell out just as fast as I stopped. I still can't kick the idea that maybe there's something else wrong with me that can be corrected and let me have my hair back. I know I can't be the only one, I'm still new at this, I'd like to hear about when you decided "it is what it is" and "whatever is going to happen is going to happen".

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Permalink Reply by Jo S on February 6, 2015 at 5:06am

I decided at xmas time to stop all treatment and to just go with it. It is what it is and I have wasted too much money on this condition. So it didn't take me long to decide to take this path as my hair only fell out mid last year!

Permalink Reply by kay86 on February 11, 2015 at 8:24am
I guess I stopped with the treatments when I was about 17 it wasn't worth the shots in my head anymore
Permalink Reply by Evangelos on February 11, 2015 at 2:41pm

Ι got alopecia areata at age 6. I remember the kids in my neighborhood calling me "the Alien" or "the boy with no eyebrows" Tried almost every treatment available at the time. Cortizone solutions, cortizone lotions, cortizone shots, homeopathy.. You name it!  Even cyclosporine at age 11. Talk about a labrat... Cyclosporine got me my hair back but it had an effect in my body. I lost my appetite, I couldn't get out of bed in the morning... The plan was to lower gradually the dose until termination. When I terminated the treatment alopecia came back with a vengeance: Universalis. Long story short, after the initial shock my folks and I decided that it wasn't worth destroying my health to grow hair and started living with my condition and making the most of it.

I am now 35 most of my life bald, and my wife says she'll divorce me if I grow hair back... ;)

Permalink Reply by Vanessa on February 12, 2015 at 12:33pm

good luck to you and I hope all is well but we have a variety of head coverings that will enhance you regardless of hair or no hair.

http://www.myheadcoverings.com/head-coverings/pc/Stretchy-Cotton-So...

good luck

Permalink Reply by Chris on February 14, 2015 at 7:17am

My story is very similar to Evangelos although I developed it much later - around 24.    I too tried every treatment recommended by my dermatologist - to many to remember.  The last straw was the immune-suppressants that they prescribed.  They worked wonders at re-growing my hair but made me physically sick.  I could not get out of bed in the morning without getting nauseated.  It seemed the more things I tried the faster the alopecia developed into full blown universalis.  Just like most people here growing hair was not worth the toll on the rest of my body.

I still remember the day back in October of 2005 when I made the decision.  I came home handed the clippers to my two girls and said lets have some fun.  The response was priceless -- all wide eyed 'Really!'.

Take care, stay strong and surround yourself with loved ones as you take this next step in life's journey.

Permalink Reply by Mary Burns on February 14, 2015 at 7:17am

I decided to stop all treatment as I had spent an absolute fortune on so called remedies and a dermatologist with absolutely no results. This was about six months ago. I haven't lost anymore hair and I can see little tufts starting to come through so really I feel if its going to come back it will on its own accord without treatment.

M Burns

Permalink Reply by Shari on February 14, 2015 at 7:36am
I think it's a very personal decision that in many ways can be driven by an individual's situation. A mom in her 30's who has several young kids may decide "it is what it is" faster than a single 22 year old based strictly on life priorities. Not saying the mom would be more accepting or less upset but she just wouldn't have the time to focus on it as much and my guess is she would also want to show her kids how hair doesn't define you.

I was 41 when I got AA and fortunately its still very manageable with the steroid shots. I haven't lost all my hair but at its worst I had about 10-13 spots on my head with 2 being the size of baseballs. I've been getting shots on and off for the last 3 years. I've taken breaks but I find my hair doesn't grow back without them. However, I'm not a slave to my shots, I go when I can find the time (im a full time working, single, mom of two teenage girls) and its hard to come up with the $175-250 monthly (my insurance doesn't cover Dermatologists). I use makeup tricks to hide my polka dots and stock up on brown liquid eyeliner, brown matte eyeshadow and any other inexpensive makeup that I can use to color in my spots.

I wish you peace with your AA and I'm confident you will find your "it is what it is" time when your ready. Be patient with yourself, it's a huge loss to process and you need time to do that.
Permalink Reply by Solange De Santis on February 14, 2015 at 8:08am

I went AU 17 years ago when I was pregnant. I have over the years researched the "treatments" available and have not had any of them. I put treatments in quotes because most of them seem to be toxic or don't work long term on AU. Recently went to a derm for the first time in several years and she mentioned a treatment getting a clinical trial in New York. Oh, the only thing is there's a possible side effect of lymphoma. No thanks. It's not worth it to risk lymphatic cancer in order to grow hair. 

It is what it is. I have gone wig-free for about 12 years. It's challenging, but I got my eyebrows tattooed, wear light makeup and earrings and every day try to feel beautiful just the way I am.

If a real treatment or cure comes along, fine, but for now I feel the treatment is worse than the disease. 

Permalink Reply by KFlame on February 14, 2015 at 9:19am
Kind of ironic a possible treatment that helps hair loss but could make you ill..The treatment for the cancer results in hairless..
Permalink Reply by concerned mom on February 14, 2015 at 8:40am
Wondering if anyone has tried Scoric Acid therapy to regrow hair. Our 11 year old son lost all of his hair in the Fall and dermatologist highly recommends it. Rheumatologist too. They said that they have patients that had alot of success with it. It creates a small allergic reaction on scalp to create a distraction for immune system so it stops attacking hair follicles and hair can grow back. Our son has other symptoms prior to hair loss such as stomach aches, nausea, headaches, lack of appetite and has some weight loss. Rheumatologist is checking via blod tests if other auto-immune issues are present. We have been told one an have multiple auto-immune disorders at the same time and hair will continue to fall out until whatever is causing his immune system to act up can be reversed. Now our son has developed eczema too (another A.I.D. He was very healthy a year ago But symtoms seem to have a domino effect on his body. Any advise is highly appreciated.
Permalink Reply by jenamr on February 14, 2015 at 9:05am
Concerned mom ,
While I can't comment specifically on squaric acid, the allergic reaction or agitation method does work for some people. My mother was my hair dresser growing up and when my spots would get out of control she would mix bleach and peroxide ( like she was doing my highlights) and rub it into the bald areas. Then shed actually wrap my head and have me sit under the drier until I literally couldn't sit anymore. The itch was the most intense feeling I'll never forget it. Worked every time though! My mother passed away when I was in college so I stopped treating this way. Squaric acid will work the same way if the alopecia reacts to that treatment at all . Good luck with everything! I have a young son now as well. Being that my mother and grandfathers brother both had alopecia I fear giving it to my own. Prayers are with you :-)
Permalink Reply by Jean on February 14, 2015 at 1:58pm

I used Squaric Acid for a bit. It was very expensive and had to be created by a pharmacy which did compounds. I don't feel like it did anything for me, but I have heard of others that used it and it did work, especially in pediatric patients. 

Not sure if that helps, but hope it does!

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