Replies to This Discussion

Permalink Reply by Celia on September 26, 2013 at 3:48am

I understand that hair transplants including eyebrow transplants may only work short term as the areas with respect to FFA are damaged. Also eyebrow hair is different from the hair on your head - anyone having hair transplant would have hair taken from a donor site on their scalp where there may be plenty of healthy hair. With eyebrows - where would you find a donor site if your brows have gone ? You would not use scalp hair as this would grow at the usual rate. I am happy to be corrected if I have got this wrong !!! I had eyebrow tattoos done 10 months ago - what relief not to have to keep drawing on my face ! Suddenly the face has more expression when brows are there. Go for tattoos would be my advice - without this site and a recommendation from Debs, I would not have thought of tattoos so quickly. All the best ! Celia

Permalink Reply by ElleMN, USA on September 27, 2013 at 9:28am

Hi Katy. Just wondering if you've gotten an answers yet.have you been able to get in to see Dr. Hordinsky?

Permalink Reply by Katy M. on October 1, 2013 at 8:58pm

HI Ellen,

Sorry- I've been waiting for my appointment with the dermatologist. Saw Dr. Lilly today at park nicollet (st. louis park). She did 2 biopsies. She said it looked like FFA or something like that and not Areata. Turns out she was one of Hordinsky's students, so she said I landed in a good spot as far as knowledge and resources regarding FFA.

My eyebrow transplant is just short of 2 months post procedure and the Dr said I shouldn't expect full results for 4-6 months after. All I can say is about 10 hairs remain of the close to 600 grafts they did :-(. Part of the process is that they (the transplanted hairs) do fall out and then a new hair grows from the transplanted root- which can take up to 4 months. I'm not too optimistic, however, based on what I see so far. The Dr did warn me that FFA cases rarely (but sometimes do) work. As a goodwill gesture he offered a partial refund if they do not grow.

So- Dr. Lilly says it might take a week for full pathology on my biopsies, but she promises swift treatment once they know exactly what is going on.

My hair is thinning pretty rapidly. The bald spots are pretty obvious and I'm having a harder time styling my hair to hide it. I use a hair powder (bumble and bumble) to spray in the part and that does hide my scalp and gives my hair a thicker appearance. I have always battled my hair and it's been greying since my late 20's- so a wig might actually not be a terrible thing except what do people do at the gym? At the beach? Aren't wigs hot? Where do people get really good wigs? natural looking and cool feeling? Are they custom made? Can you style them? Wash them? Do people work out in them?

I want to be hopeful that once the biopsy comes back that some treatment would be effective, but worried it's too late.

So- that's the update.

Ellen- once I get the answer from Dr. Lilly- I'll check back in and let you know what course of treatment she if recommending.

Also- if one has a medical diagnosis of alopecia- does insurance cover wigs?

Permalink Reply by ElleMN, USA on October 4, 2013 at 10:45pm

Thanks for the update Katy and good luck! I don't remember if I already mentioned that I'm taking a break from treatment right now and just waiting to see what happens naturally, so a wig or hairpiece might be in my future. The other women on this sight make wig wearing seem like a breeze. Not sure about insurance coverage for hairpieces but guessing it depends on your individual plan. We have mediocre individual health insurance so we'll see what is offered on MNsure. I'd like to see Dr Hordinsky before the end of the year just to check in but each appt is out-of-pocket for me. Sounds like you are managing this well so keep up the smiley face!

Permalink Reply by PJ - MN, USA on October 6, 2013 at 1:55am

Katy - good to hear you ended up with Dr Lilly. Sounds like she will be great for you in this whole process. Do you still plan on seeing Dr Hordinsky? I will be seeing Dr Hordinsky in a couple weeks. I go about every 3 months now. Not sure if it's worth it anymore, nothing has changed in awhile. I'm trying to get used to wearing hats yet, let alone wigs. Not ready to go down that road yet. But it might be a good idea to check and see if/what insurance may cover. Let us know how it goes with Dr Lilly.

Permalink Reply by Michjo57 on September 28, 2013 at 12:16pm

I lost my eyebrows first, 2-1/2 years ago. Then I noticed my hair thinning. It just kept going to the point of hair pieces and now wearing hair. One year anniversary of wearing hair was in September. I hid in my house for six months. I discovered essential oils to help with the emotional healing of this affliction. If you look around there are many bald people in this world. I chased doctor after doctor, even the expert at the University of Colorado. Every doctor had a different diagnosis and treatment plan. The University doctor diagnosed FFA. Treatments prescribed from Methotrexate, Griseofulvin, Spiro, the other drug for malaria, steroid injections, Clobesterol, Elidel (spelling??) the cream for the eyebrows, Avodart, saw palmetto, doxycycline (I used because of the itching scalp, that worked not taking that anymore). All of which have side-effects. I decided to forego needing a liver transplant and just wear hair. One doctor pretty much laid it out for me and told me my hair follicles are essentially dead and said have you ever seen anything dead come back to life? Except Jesus, no I have not. So I decided to use essential oils for the emotional healing. Look up healing with essential oils. I can proudly say I wear my hair when I need to (work, church, shopping), camping I usually wear a hat. You have to go on with your life. I also did get a book called Jesus calling that helped me get through that nightmare. It is expensive to chase after all these treatments that may or may not help. I think the realization is to be proactive with wearing hair. If you lost your teeth, you get fake teeth. If you lost a leg, you would get a prosthesis. What is so hard about wearing hair? I don't get it. There are sooo many cute wigs out there now. It is a learning process with wearing hair, I have to admit. I did get my eyebrows tattooed and also some eyeliner tattooed cause I lost most of my eyelashes. Then you buy fake eyelashes. I don't wear them, can't get them on. Takes me 15 minutes to get ready these days. It's pretty cool actually.

All I can say is What doesn't kill you makes you STRONGER! Exercise is another key factor, you have to release the stress. Plus the endorphins help with depression. Godspeed and PEACE to you all.

I apologize if I was too blunt, but this is my reality.

Permalink Reply by Debs on September 28, 2013 at 1:31pm

Hello Michelle, i have used similar coping strategies as you, have eyebrows and eyelashes tattooed, i also wear wigs. Life must go on and for me sorting out my appearance has enabled me to move forwards from the shock of having FFA. I am pleased that you are in a good place in your life, it is a great support to read how other ladies with FFA are dealing with this condition.

Permalink Reply by Katy M. on October 7, 2013 at 1:01pm

Just got results from my biopsy last week. LPP. Not FFA. So now research on that. Dr. Lilly says there are effective oral medications- which I need to research more- but ultimately she's seen effective treatment of LPP (Lichen Planopilaris,) I start oral antibiotics today (will report back with what it is) and topical steroid treatment. Dr. Lilly says best case scenario I'll see a difference in a month with hair loss and worst case- I go 3 months on this before trying another course of treatment.

Permalink Reply by Alice on October 14, 2013 at 5:52pm

Katy, it's my understanding that LPP and FFA look exactly the same under a microscope and the only difference is the pattern of hairloss. I was originally dx'd with LPP but later my drrm said it looked like FFA becsuse all the loss was along the hairline. I think the treatment is the same for both but FFA is a much newer condition. I think it was first descibed in the late 90s, so not much is known about it. Supposedly it is rare but I suspect it is under reported.

Permalink Reply by LittleRhody on October 7, 2013 at 4:20pm

Hi Katy. I have heard of eyebrow transplants. I don't know if it works though. If yours does not work try using Latisse. I have been using it now for almost 3 months. I am getting slow but steady results. I have posted photos you can check them out if you want. I can't believe someone actually asked you why you pencil on your eyebrows. People just have no idea. It sucks. I have been drawing mine on for years. I'm like a professional now. LOL. My hairdresser says they look professionally done. I just laugh. Your right this site is great. Really cheered me up when I was a low point. I have officially outed myself out now on my facebook page and to all my friends and family. I feel like a weight has been lifted. Now if someone sees my missing hair at least they will just say oh she has alopecia. Instead of them saying what the heck happened to her hair. Good luck with the eyebrows. Post some photos. I'm curious.

Permalink Reply by Sam on October 8, 2013 at 10:51pm

Hi Little Rhody, I love that reasoning on telling people! Excellent point to straight up say alopecia than wondering why hair is thinning. I've told my close friends and everyone says they can't tell so they don't get it yet. I am finding so much loss now around where my biopsy was done. I swear it triggered it. Kinda wish I didn't do it. What did u decide with injections/medication? I've done 2 injections so far and periodic topical. Not consistent, struggling w whether it is helping or hurting. Not planning on oral meds so far.
Katy, I'm curious how the eyebrow implant goes as well. Good luck! I looked into that as well w a NY doc. He said they have to stop falling out first. Mine seem to be on a cycle...

Permalink Reply by Katy M. on October 18, 2013 at 9:00pm

I got my eyebrow "restoration" by Dr. Jeffrey Epstein in NY.  I got over 600 grafts (300 on each side)- transplanted from a strip of hair from the back of my head.  They were beautiful about a week-two weeks after the procedure.  He warned me that it is typical for all the transplanted hair to fall out and then takes 4-6 months for the transplanted roots to fully grow back.  At this point- I have about 10 hairs on each side.  the very few there are growing- I've even had to clip a few (which ultimately- if it works- i will have to to trim them a few times a month- which I would be FINE/Thrilled to have to do that!).  At this point, I still don't know.  My expectations are low, though...but still hopeful.  Hoping the FFA/LPP burned out in that area long ago.  I lost my brows more than 5 years ago.  I'll check in regarding the brows and give an update at the end of January. 

Regarding the LPP- my dermatologist started me on a topical steroid for my scalp and Minocycline twice a day.  It makes me feel horrible.  Just nauseous and shitty.  I don't like taking it.  I haven't taken it for a week and feel normal again- but I need to check in with her and see if nausea will go away if I keep taking it.  Anyone else been prescribed Minocycline and have adverse reaction to it?  Has it helped anyone?

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