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Comment by Lynn on February 2, 2015 at 12:10am

So sorry to hear about your nephew. That is incredibly sad to lose someone close to you at such a young age. So sorry for your loss.

Your recent FFA diagnosis, although, not the end of the world like you said, really does suck. I get it completely. There are many other things that are far worse, and I too have told myself this many many times. The injections do hurt, I agree. I told my dr at my last appointment while she was doing the injections, that she was making me curl my toes! She tries to hurry through them, but it's just terribly painful. I find that if she does the left side of my scalp, and then gives me a 5-10 second break to let me catch my breath before moving on to the right side, that it seems to help a little bit. 

I think losing your eyelashes is pretty normal with this condition. There are products that your dermatologist can prescribe for you to apply to your eyelashes and eyebrows, that may help with the loss. I have used products on both my eyelashes and brows, and haven't experienced too much loss in either of these areas. I have no hair on my arms any longer and very little on my legs. It just seems so weird to me.

I still have very intense itching with this condition. My scalp itches almost constantly, and I have pretty severe itching all over really. It can be maddening. Some days are better than others, so I just try to take it one day at a time. 

All the best to you. Hope you find comfort in this site, as I have in knowing that you aren't going through this alone.

Comment by DragonandFox on February 1, 2015 at 11:37pm

hello all. My FFA diagnosis was confirmed just this past Friday (Jan 30, 2015).  Along with the confirmation form the biopsy result, I agreed to get steroid injections. My Dermatologist tried to be as quick as possible but the 10 injections were SO painful.  Can't wait 'til next month's dose.  This whole thing kinda sucks. After 2 years of intense stress and then Just as I felt like I was getting back on my feet my beloved 21 yr old talented musician nephew died by suicide. I never knew there could be a sadness and grief level that goes deeper than I've felt in the past, but, there it is...and now I have this auto immune disease.  *sigh*.  I start acupuncture, after over a year without, tomorrow.  It's interesting and helpful to read all your posts. it turns out, Frontal Fibrosing Alopecia is one of the most rare.  I have a question.  I wonder if my eyelashes thinning and becoming much shorter is a result of this too?  I was told a long time ago I have blepheratis. it's not the end of the world to have these problems, but it sure is demoralizing. Only people who are experiencing it can relate, everyone else keeps saying "it's not the end of the world"

Comment by Lo on February 1, 2015 at 1:05pm

Hi Ellen. Would you mind sharing a pic of the haircut? Thinking about something similar. Need some inspiration.

Comment by MJ on February 1, 2015 at 12:28pm

Questions: I am one of those who fortunately has no rash or itching symptoms but the doctors can easily see what they call "scaling." It looks like white flakes. I thought it was from the drying effect of all the topicals but was told it was characteristic of FFA. Does anyone else experience this and is it only present when the FFA is active or is it always there? Also,I have been puzzled as to why the receding area takes on that white rubbery look with a magnified mirror when the disease is deep in the follicle. I wouldn't mind as much if receding scalp looked "normal" as many people naturally have higher hairlines. Does anyone have any idea if the scalp eventually normalizes?
MJ

Comment by MJ on February 1, 2015 at 12:09pm

Ellen,
Thanks for the haircut suggestion. I was just texting with my hair stylist about finding a new style. I was enrolled to participate in the Duke study in Oct at my last appointment but I have yet to fill out the survey. I feel bad about it but I just hAve not had the time to try to go through my old med history.

Comment by ElleMN, USA on February 1, 2015 at 10:58am

I visited my dermatologist at the University of Minnesota this month and am participating in a research study to evaluate FFA-clinical portion; the sponsor is Duke University. They are looking for participants so if you're interested you can ask your dermatologist for information.

I've also been in to my hair stylist and wanted to share his suggestion to cut my hair into a long pixie. I've had long hair most of my life but with about an inch of hairline missing I decided to give a short haircut a try. I'm still getting used to it but I have to say the focus if off my forehead now. Just google long pixie haircut and you'll get the idea. Hair is swept forward to create bangs. 

Also, I just wanted to share this story about stem cells growing hair from the I fucking love science web site…http://www.iflscience.com/health-and-medicine/scientists-grow-hair-....

Comment by Annie on January 30, 2015 at 3:14pm

Jen, I noticed extra shedding a couple weeks after I started using Rogaine.  It's perfectly normal, commonly referred to as dread shed.  It's a good sign that the follicles are being stimulated & preparing for new growth.  My dread shed lasted for about a month, then I went back to my normal ffa hair loss.  I also grew hair in areas where the ffa is active, but those hairs are fine & wispy.  I've been using 5% Rogaine foam over my entire head and on my eyebrows once a day for almost two years, and haven't experienced any kind hair overgrowth.  

Comment by Alice on January 29, 2015 at 3:08pm

Jean, as I understand it the women's is 2% and the men's is 5%. My derm advised me to use the 2% twice a day initially, to make sure my scalp could tolerate it. After 3 mos, and about the time I started to notice new hair growth, I switched to the 5% once a day. Using foam or liquid is a matter of preference. I like the liquid, because I can get it right on the scalp instead of the hair, but most others like the foam. Good luck!

Comment by Jean on January 29, 2015 at 2:55pm

I think I'm going to bite the bullet and try Regaine.  My FFA is thankfully moving very slowly and my scalp is fairly clear.  My derm seemed to think that it was worth a try.  From you lovely ladies, I gather the men's strength foam is best but is it the regular strength or Regaine extra I need to buy?  The cheapest I've found is through Amazon.

Thanks - this site is keeping me going!

Love Jean

Comment by Alice on January 29, 2015 at 8:04am

My hairdresser and I have actually noticed some new growth at the sides and just in front of my no receded hairline.  My theory is that only the follicles actively growing hair scarred over and the Rogaine awakened those that were dormant, like on the rest of my head. I didn't notice any shedding when I began using Rogaine. 

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