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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Permalink Reply by SandyA on April 21, 2015 at 9:09pm

Sally,

I think you and your hair look wonderful in both pictures! It looks so natural.

Also--that is a great idea about giving info to hairdressers. I'm taking your lead and am going to talk to my hairdresser about the FFA during my hair appt. this coming Friday.

Permalink Reply by PJ - MN, USA on April 16, 2015 at 12:20pm

Lo - You do look great!! You would never know you have FFA. I supposably am one of the rare ones that is in a burnt out stage according to my Derm. I say supposably because I feel my hair is still getting thinner overall on top. I started noticing hairloss I think in 2008. I saw many different doctors and on my 3rd Derm I was diagnosed by biopsy in Aug 2012. She is very conservative and prefers not to take oral meds. The regiment she got me on right away was kenalog steroid injections, washing my hair rotating between Head & Shoulders Classic and DHS Shampoo with Zinc. I let them sit on my scalp for a few minutes. I also use the Free & Clear brand hairspray. For conditioner, she now says I can use whatever I want just so I don't scratch it into my scalp. I also use Clobetasol Foam when my scalp gets itchy and Elidel cream on my eyebrow area. I had lost all my eyebrow hair and  lost hair in my temple area and across top front of hairline before treatment. I have had some regrowth along hairline. I was lucky and had not lost a lot of hair prior to getting treatment. With my hairstyle people can't tell I have hairloss. I do still color my hair. She has suggested trying laser treatment in past for eyebrows, but that is very expensive and I don't like the idea of that by my eyes. I had tried Doxy somewhere in there, but did not think it helped. The kenalog injections did not help with my eyebrows at all, but I feel it really helped with the hairline. At my last couple apts they have also been checking inside of my mouth for lesions. Apparently this is another issue that goes with FFA.

Permalink Reply by Lo on April 16, 2015 at 3:05pm
Good for you! So happy that you responded! Would you mid haring a picture of your current hairstyle? It may be of help to others deciding on a style... And an inspiration! Many thanks!
Permalink Reply by Brenda, IL US on April 16, 2015 at 11:39pm

I think you look beautiful Lo.  Your family does too.  I've given up on any treatment plan.  I'm still taking 200 mg Plaquenil twice a day for lupus tho.  I've lost 2 ' of hair all around my face to above my ears.  My eyebrows are tattooed.  Best thing i've done.  My stylist cuts my hair so that my bangs are coming clear back from the crown.  It's getting harder and harder to conceal the loss tho.  I have a topper that i ordered that is the wrong color and a wig that i like but i have no idea how to put it on.  More later.

Permalink Reply by Will Be Healed on May 2, 2015 at 2:11pm
Brenda, i have just begun to take plaquenil and I am wondering since you began to take it, if you noticed tat your hair stop falling or if it slowed down. Also, at day 4, I noticed red blotches on my face and neck. Did you experience this? Also, how long did you have FFA before you began taking plaquenil? It took me 5 years and only decided to take it since nothing else was working to stop the hair loss. I know that everyone says the hair won't grow back, but I continue to have hope and pray about it a lot. Thanks for your help. If anyone else is also taking plaquenil, I would appreciate your comments on your success, if any, as well as any side effects you experienced.
Permalink Reply by MJ on April 17, 2015 at 5:55am
Lo, i have been curious about hair systems that are glued on for extended periods and how they would work for those of us with FFA. Do they cause any irritation to the skin or is the part that is completely bald no longer a problem?
Permalink Reply by TrayG on April 17, 2015 at 8:49am

Good Morning,

I'm also one of the lucky ones diagnosed with FFA in November 2014.  I have lost about 1 1/2 inches at my temples and by my ears and about an inch by my bangs, I have lost most of my eyebrows as well.  I am on the same treatment as most, plaquenil, shots and I also use rogaine.   To date, I haven't seem such success with this treatment, but I try to stay positive and pray every day for it to stop for myself and us all dealing with this.  At this point, I can still "kind of" hide it (I have curly hair), but wearing my hair up when I exercise has become a challenge, so I am in the process of looking to get "taped/glued in pieces" as Lo described above. 

I have to say, Lo has been a friend, an inspiration and quite honestly, she's as beautiful outside as she is on the inside.  I don't know what I would have done if I didn't have her to help me through this difficult process (and yes, we met on this site).   She is absolutley the one TRUE blessing that has come with this condition. 

Sally - you look beautiful and as much as you think you look "wiggy" I have to tell you, YOU DON'T.  All of the options in your pictures look so pretty on you.  Remember, we are our worst critics....I'm the exact same way, so I'm not judging. 

I have a dr. appointment at Yale in CT at the end of the month.  It's a 2 1/2 hour drive each way, and it's taken a very long time to finally get this appointment, but I will report back here what the dr. has to say.   Hopefully, he can shed some light on new treatments.

I wish you all peace and blessings....have a great weekend!

Permalink Reply by sallylwess on April 17, 2015 at 5:01pm

Thank you for your kind word, TrayG.  We are here to support and lift each other up.  I've gotten so I don't trust a lot "solutions" to cover up  my hair loss.  I know that the wig shops and etc. are there to help us, but I also know they are out to make money.  I've decided not to spend any more money on wigs, toppers, glue-on solutions (which I haven't tried) until I know the solution is the best one for me not the best solution for the seller of the product.  

I try to leave my scalp free of wigs and etc. as much of the day as I can so I don't irritate the scalp more.  

I will be very interested to know what you hear at Yale.  Blessing to you and all of my fellow FFA ladies.  

Permalink Reply by yukonalopecia on April 21, 2015 at 1:05pm

Hi, our situation sounds very similar. I was diagnosed with FFA in 2009.  I had lost my eyebrows almost completely in 2007, but it took two years for a official diagnosis.  I too have lost quite a bit around my ears and starting a receding hair line.  I can still hide it pretty well, but not sure for how long.  Can you tell me more about the hair pieces you have?  Where did you find them, and do you put them in yourself?

I have not taken plaquenil because I am too scared of the side effects.  I am going through my second round of Kenelog injections into the scalp.  Did this a year ago and it helped to slow it down, but no regrowth.  I am starting rogaine a little later this week. I am also starting Doxicyclin.  

Do you follow any specific "natural" treatments?

Permalink Reply by Lo on April 21, 2015 at 6:09pm
Hello there! If you look at my response to MJ, you will find details if the glue in pieces. The guy who did it for me taught me how to reglue when necessary... Which is about every 2 weeks. The pieces last about 2 -3 months before new ones need to be cut. I wouldn't say I use natural remedies... But I have always eaten very healthy and naturally. The only big change I've made as if late is I do try to limit gluten (not completely, but less), and dairy (again, not completely). I eat a LOT of blueberries... And kale salad. Those are 2 staples in my diet. I am so impressed that you were diagnosed 6 years ago... And can still wear your own hair! Good for you! You just may never even need the pieces... But if you decide, they are a nice option. So glad that you responded... And if want I share a picture I your hairstyle, I'd love to see it! Blessings... Lori
Permalink Reply by MJ on April 21, 2015 at 7:56pm
Hi all,
So I had my six month appt yesterday. Had to take the day off work as I have a three hour drive to the Cleveland Clinic. Even though I think I have lost a little, I was told I was still stable. My new issue is that I had very thick scaling from all the topicals along my hairline and about an inch back. I was given a prescription of a peanut oil topical called fluociinole Acetonide. I have to put this on at night and wash it out in the morning until it clears. It may take a week or more. She said there was no way that hair would be able to grow with that layer of flakes on my scalp. Got home late, exhausted and then spent today obsessing over my hair while at work. Had a pity party for myself and now need to get over it.
MJ
Permalink Reply by SandyA on April 21, 2015 at 8:45pm

Thank you so much for starting this thread! I can't tell you how much I appreciate the info everyone is sharing.


Although I can't participate in terms of treatment and outcome since I was only diagnosed last month, I thought I would share my latest hairware I just started to use in case others could use something similar.

I wanted to show before and after so here I am before my toupee. My bangs are thinning too much to cover the corners of my forehead entirely and b/c I've always had a high forehead to begin with, you could say I had a head start on the receding hairline. :-) Please excuse the hair--I just started the Curly Girl Method last week due to the FFA and am transitioning....although I could have at least smoothed that puff on side of head. LOL)

I found these Mia clip-on bangs in the clearance bins at a local beauty supply store for only $1. (can purchase them here). I noticed on the Mia site that the clip-n-bangs have been redesigned to cover more of the crown but I would prefer the straight bangs to hide them better. I did give them a haircut to better blend in with my bangs.

How I put them on: (the key is make sure some of my real bangs lay on top to cover the fake-bangs band)

After:

Except for the shinniness of the synthetic hair, they really blend very well...even my teenage girls don't know when I have my rug on.

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