Success Stories?

Hello, ladies (I don't think we have any gentleman on here - but if we do, hello to you, as well!), 

I was hoping to hear back from people who have had some (or maybe a lot) of success with treatment - be that medicinal or natural - or both.  I know we are, or have been, on similar paths with this diagnosis, some taking plaquenil, others taking antibiotics, some doing shots, others doing topical, etc.  Has anybody been on treatment for 6 or more months, and had a slow down of hair loss?  My dermatologist is always so positive - telling me that he has absolutely seen success with these treatments (halting/slowing down hair loss, and alleviating symptoms).  I walk out of there kind of inspired, and then after a bit, feel a bit discouraged.  So maybe we could all respond with:

  • Outcome of our treatments thus far (and what treatments they've been)
  • How much hair loss you've experienced, and in what timeframe?
  • Are you still able to "wear" your own hair, and mask the loss?  If yes, any tips on hairstyles? (Ellen had a good tip for us!)

I will share mine, and pray that we can get others to share:

  • On plaquenil, shots, and finasteride for 2 months since diagnosis.  Too early to tell if any of it is working. I eat very healthy (always did, but even more so now).  I swear I eat a pound of blueberries a week.  
  • I have lost about 1.5 inches above my ears, and about 1 inch at temples - and this took about 4 years.  I have recently started to recede at my hairline/forehead - that is back about 1 or 2 centimeters.  I was told 4 years ago it was AA - and was not offered treatment.  It wasn't until January of this year that I asked if my hair was ever coming back that my derm decided to do a biopsy.  The rest is history.  :-)
  • I am still able to "wear" my hair (shorter bob-style), but recently got heavier bangs cut in... and was also fitted for two small hair pieces that cover the bald areas at my ears.  They are glued in and actually stay put for a good 2 weeks (washing hair and all).  I like this option... but when I take them out, I am still, for now, able to hide the loss until the wind blows.  I am a bit worried about the front hairline - not sure if they can do a custom piece for that - time will tell. I pray the medicine works in the meantime.  And my healthy lifestyle. 

I will share a picture of me, and my family with all of you.  This was taken in March.  They really are the blessing and light in my life... and where I try to keep my focus daily.  Blessings to all of you. 

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Replies to This Discussion

Permalink Reply by star on April 14, 2015 at 4:40pm

You look amazing keep up the good work!! :)

Permalink Reply by MJ on April 14, 2015 at 4:55pm
Lo,
You look amazing. Your hair looks great! Most of my loss has been at the top so I am constantly trying to figure out how to wear my "bangs." Because they now have to start further back, they don't act like bangs very well because of the curve of my head. I am going for my 6 month follow up on Monday so may have a report after that. I can still ,anage and no one knows about my prob that I have not told. It is just that I am always having a bad hair day!
MC
Permalink Reply by Annie on April 14, 2015 at 5:50pm

Lo, I agree that you look great!  I was diagnosed with ffa 2 years ago, and I will share my journey with you when I have more time, but for now, I'd love to know where you get your hair pieces.  I would love an option that I don't have to take off every night.  Like you, I can hide my hair loss until the wind blows.  I'm constantly walking with my head down, and one of these days, I'll collide with someone or something! 

Permalink Reply by Lo on April 15, 2015 at 11:26am

Annie - thanks for the response.  I got the hair pieces cut to size for the bald areas above my ears.  They are glued in and stay for about 2 weeks - at which point I re-glue them.  The guy who did it (owns a wig shop and hair salon) taught me how to clean and re-glue, so that I didn't have to always go back to him.  He ordered a woman's hair "topper" that has this thin, lace-like backing to it, and he measures and does a template - then uses that to cut out of the larger piece.  The pieces need cleaned and re-glued about every 2 weeks, and he said they'd last me about 2-3 months before he would have to cut two new pieces.  I wash my hair every day - and blow it dry... and they do stay put.  They work for the side areas, and I hope they will work for the bang area (actually, I pray I never need one made for that area, but want to be prepared).  I'm actually not wearing the pieces in that photo that I posted.  I didn't have them yet while we are on vacation in March.  They do fill in the "blanks" pretty well.  A friend of mine on this site, Tracey, just looked into getting them done, and she was successful in finding a place (similar to where I went - a salon that also sold wigs/hair pieces) that is willing to do it for her.  You can either do tape (and it is evidently quite strong), or glue.  I opted for glue because, to me, it was more "permanent".  I haven't tried to swim in them yet... but the guy who did mine said they should be fine... but salt water may "wear" them faster.  Anyway - I hope this helps you.  Are you currently wearing something?  You mention that you want something that you don't have to take off every night - so I was wondering what that "something" was (clip in, wig, etc.).  All the best to you!  I've attached a photo of what the hair piece looks like, as well as what the cut pieces look like "in".  The first photo is the entire piece.  The second one is the piece with my real hair pulled back, so you can see it.  The last one is with my hair covering the piece.  

Permalink Reply by Annie on April 20, 2015 at 11:41am

Lo, thanks for your response.  Your hair pieces look amazingly natural.  I'm still able to hide my hair loss, but I'm beginning to get self-conscious about the bare spots at my both temples. 

Permalink Reply by NatalieW on April 14, 2015 at 9:24pm

Hi Lo -I agree with the others. You look gorgeous and have a lovely family. I think we are all so painfully aware of the hair loss, and feel as if that's all people are ever looking at. But often they are not, and haven't even noticed. Good luck with your journey.

  • Anyways, I am 39 and was diagnosed last year. Looking back at photos, it has been several years of thinning at the front of my hairline and slowly losing eyebrows. But I was busy with young kids and probably hadn't noticed until I lost quite a bit. I have been on Doxycyline for 6 months now and think it has slowed the hair loss, but very hard to tell when I don't know what the hair loss would have been without it. I use Dermol drops once per day. I use Regaine twice a day on my eyebrows and hair line - eyebrows with great result. They are thinner than before, but no bald patches anymore! Hurrah. I have also gone gluten free and eat as naturally as possible - again a bit of challenge sometimes with a young family ($ limitations) Doxycycline certainly helps with the irritation and itching and redness I think and enables me to keep using Regaine which is very irritating to my skin.
  • I have lost 3/4 inch at the front of my hairline, none above ears but starting to thin at top and back of crown.
  • No hair piece yet but am talking with Freedom Wigs who are in New Zealand also (where I am) about making a topper out of my own hair. It is very expensive so just weighing up the short term value of it before I lose more hair.
Permalink Reply by sallylwess on April 14, 2015 at 10:31pm

Lo, thank you for your well thought out and organized post.  I would like to see more like this.  Your informative post really gave me hope.  I will answer some of your questions as well as I can.

My experience and treatment:

  • When I was diagnosed in 2013, I was prescribed clobetasol liquid and told nothing would work, but I could try this.  I changed derms.  He became the fifth one I saw.  I was prescribe clobetasol foam.  We discussed both plaquenil and finasteride.  I have not used either because of possible side effects.  I was told I was at high risk for breast cancer with finasteride.  I was given kenalog shots and on the third one there was a noticeable reaction.  I was flushed and had a rash.  I took a photo for my doctor.  He said he thought he saw swelling also.  I am sharing the photo.  (I must trust you a lot to share this with you.)  You can see in the photo how much of my hair line I have lost.  What you can see is that I am losing a lot of hair on the top of my head and at the top back.  I also reacted to clobetasol with a rash after using it for months.  I don't think it helped, but it did calm my scalp.
  • I have flirted with using Minoxidil.  I have not been consistent with its use because I always break out with redness and my scalp becomes scaly.  I also note some weight gain.
  • I first saw a dermatologist in 2006.  He said I had psoriasis and prescribed Protopic.  This took away the inflamed redness, and I notice the hair fell out, but I had not idea that this pattern would continue on a slow basis.  I noticed hair loss, but everyone said it was from stress because I had recently lost a daughter.  In 2011, my eyebrows suddenly disappeared overnight.  I then saw yet another derm who said I had AA.  About a year later, my endocrinologist insisted I get a biopsy.  No one else ever suggested that.  The biopsy in March 2013 came back as FFA/Lichen Planus.  I started treating with shots and clobetasol in January of 2014 when I found a new derm.  
  • In summary, I have not had great results, if any.  I had lost quite a bit of hair before I was ever treated.  For some reason, in September of 2014, while I was using clobetasol and shots, I lost a lot of my front hairline to the point where I could no longer hide what was happening.
  • I have naturally curly hair.  I sometimes wear it naturally and use a headband to disguise the  hair loss.  Other times, I wrap a scarp as a headband and weave some curls in to fall out of the weavings.  I use the following strategies with wigs etc?
  • I have a human hair topper that does not work that well in my opinion.  It is more blond and my hair is gray.  It was the closest I could find to match in color.  There are no toppers that I know of that are curly.  So the color and texture of my hair are not the same as the topper.  This means I must style my hair in a more straight style and weave it in.  I get many compliments and people say they have no idea it is not my hair.  It is not the best fix as I little hair to clip it to.  It does not allow me to be active at the gym.  Also, it takes a lot of styling to make it work with my hair.  It cost about $500.
  • I also have two synthetic wigs.  I don't like wearing them, but I do because I am at the point where I feel most comfortable wearing a covering of some sort: headband, topper, wig.  The synthetic wigs are not that comfortable and are itchy and I feel like a fake wearing them.  I get many compliments on them.  They were inexpensive wigs, but people don't seem to be able to tell.  I swear I can spot a wig a mile away.  I just can.
  • This is a journey.  One that I have found is filled with a lot of questions and not a lot of answers.  
  • I treat the loss as any other loss.  I am grieving it.  I am trying to come to acceptance.  I continue to look for cures.  

What I would like to see:

  • I think there needs to be education awareness for hair dressers to spot the beginning of the disease.
  • I think there needs to be more consistency in treatment among doctors.  I wish they were getting more information on this.  Even the Derms don't know much about it.  
  • I would like to see a data base of people with the disease that charts the progression of the disease and how it responds to treatment.

My part - What can I do?

  • I talk to hair dressers.
  • I print things off for my doctors.
  • I hope to write a blog about it soon.  I have never written about my hair loss on my blog.
  • I record my hair loss with photos on Evernote.  I try to record reactions to my treatments also.

First file - rash after shot and hair loss

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Permalink Reply by sallylwess on April 14, 2015 at 10:33pm

By the way, Lo, you look absolutely fabulous!

Permalink Reply by Lo on April 14, 2015 at 10:51pm
Thank you for he kind words and more so for your story. That curly wig looks fascinating on you! An both the wig and topper are far from "wiggy" like. I wish you all of the best. How much overall loss have you experienced?
Permalink Reply by sallylwess on April 14, 2015 at 10:57pm

I would say that my hair is much thinner over all.  I used to have a mop of hair.  I have lost about the width of two fingers on either side of the face.  My hair line is the width of eight finger from the eyebrow and is losing about another finger or two width behind that.  There are still a few hairs there.  

The first two files below were taken in 2012.  

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Permalink Reply by MJ on April 15, 2015 at 6:15am
Sally,
Thank you so very much for sharing your photos. I feel so much like you about wigs...I am constantly on wig patrol. Lol. But, i must tell you that your pics gave me so much hope in that you looked fabulous, especially given that they were not expensive. Although i can understand mourning that beautiful curly natural hair you once had, you can easily feel comfortable and confident with either of those options!
Permalink Reply by sallylwess on April 15, 2015 at 12:56pm

Thank you, MJ.  I'm learning to go with the flow.  I choose to wear wigs rather than be self conscious about the appearance of the hair loss and the sometimes red and flaky scalp.  If the day is one where the scalp is painful, I use scarves or headbands.  

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