Comment

Comment by Linda from Cincy on August 16, 2014 at 11:11am

Annie, Maddy, thanks for sharing.  Sounds like you both struggled with adult acne which, like rosacea and seb derm, is a disorder of the sebaceous glands.

The sebaceous gland happens to be located in the part of the hair follicle that is attacked/destroyed in FFA and other scarring alopecias:  

     ". . .all cicatricial alopecias involve inflammation directed at the upper part of the hair follicle where the stem cells and sebaceous gland (oil gland) are located. If the stem cells and sebaceous gland are destroyed, there is then no possibility for regeneration of the hair follicle, and permanent hair loss results.

http://en.wikipedia.org/wiki/Cicatricial_alopecia

So, so. . .what??  I totally get we all need to be dealing with getting the inflammatory part of this disease under control but also want to just get to the root of the problem (no pun intended).  In all of the sebaceous gland skin problems the seb gland is irritated/inflamed by androgens, specifically DHT.  And calmed by antiandrogens.

Which is why I think a DHT blocker (like Dutasteride) may be the way to go altho' I do have serious concerns about taking something like that long-term.  Until I can find a doc who will consider prescribing Dut, I'm exploring more natural ways of reducing DHT in the body or topical rather than systemic DHT blockers/inhibitors.

I'm learning so much from this site and also lurk on the balding guy sites  (and swear I will never make fun of a comb-over again!!)

Comment by Maddy, California, U.S. on August 15, 2014 at 10:57pm

I am also of Irish, English and Norwegian ancestry...pretty fair-skinned! I have not had too much trouble with rosacea, but have struggled with adult acne (cyst-type sometimes)...well, I did for many years during peri-menopause days...it has waned off now though. I actually always wondered about the adult acne (or the treatment I received for it...Retin A and tetracycline) and FFA were related since the FFA started right after the horrible cyst-like acne I was getting during peri-menopause. 

Comment by Annie on August 15, 2014 at 10:44am

Linda from Cincy,  I'm also fair-skinned with Irish ancestry.  I've never had rosacea, but I have struggled with moderate adult acne since the age of 19, and have spent my entire adult life trying to control it.  I thought I had finally outgrown it, but the topical steroid I'm using for ffa caused  another flareup.  I've always felt that acne (or drugs used to treat it) are related to my ffa. 

Comment by Linda from Cincy on August 15, 2014 at 7:07am

English, Irish, Swedish. . . most FFA patients women.  This sounds like the demographic for rosacea. . . which I have also struggled with since my late 30's, early 40's - when my hormonal balance started to get out of whack.  The more my female hormones have dropped the more issues have popped up--now this!

Anyone else have rosaca, seb derm - other types of inflammatory skin conditions?  I've always heard rosacea is chronic, progressive.  Possibly the inflammation has spread to our scalp/hair follicles from our faces?  This might explain why our eyebrows are often the first to go?  Drugs like spiro and also finacea have helped rosacea patients and they are antiandrogens.  

Comment by cubbieblue on August 14, 2014 at 11:33pm

Kpengell, I think we might be seeing the same doctor at Northwestern. I'm wondering how long you used the Beta Dip before deciding that there wasn't much of a difference.  I am using that now after trying Clobetasol Proprionate for a few months and thinking that it didn't seem to help.

I also am of Swedish, Irish, English (and Scottish) lineage and coincidentally I also had a skin disorder of some kind in kindergarten or first grade, but I don't think it was terribly serious.

I'm also curious if anyone knows how long it generally takes for FFA to burn itself out.  Although I am recently diagnosed, I feel like I am in my third or fourth year.  Thankfully it does seem to be progressing rather slowly.

Comment by Kristen P on August 14, 2014 at 5:17pm

Hey all! Thought I'd comment since I am in America. I'm being treated at Northwestern Medical Faculty Foundation in Chicago. I started steroid injections in January. I received them in Jan, March, and last week. I had an appointment in May but things were stable so they skipped injections (since they have side effects, as mentioned.) I noticed a flare up late July and she did document a little additional loss. I go back in six weeks. She calls FFA the bane of her (and many dermatologists) existence, since little is known about what causes it and there is no cure.

I am not taking oral medication. I use Lumigan (which is typically prescribed for glaucoma) on my eyebrows because it has the same active ingredient as Latisse...but insurance will cover it. My eyebrows seem okay. I have used both Fluocinonide .05% and Betamethasone Dipropionate .05% on my hairline. I haven't seen much of a difference in them but find the BetaDi has a more offensive smell. 

I am a pretty young "victim" of FFA. I would say it started when I was 34/35, but wasn't officially diagnosed until last year, right after I turned 36. I am not pre-menopausal. I had a DIFFERENT extremely rare skin disease when I was younger. I was hospitalized for chronic bullous dermatosis of childhood when I was 8 years old, and received treatment for it for about 1.5 years after.

I am very fair, with English, Irish, and Swedish lineage, which seems to be pretty common among FFA patients. My derm did mention they are now seeing it in all races and also in men. Maybe now that men are getting diagnosed we'll see a better focus on research! :)

Good luck to you all.

Comment by Jean on August 14, 2014 at 2:44pm

Forgot to mention in the email exchange with Debs (huge thanks for the brilliant fact sheet, Debs) that my derm has recently been to America to check out any new thinking on FFA.  She said that whatever treatment sufferers are using, it should be changed every 6 months and this has the most positive results.  No absolute model for success though I'm afraid!

Love Jean

Comment by Mary on August 14, 2014 at 2:20pm

Seen consultant today. Continue on anti malarial tablets and dermovate cream. Hair loss appears to not to have changed over last six months. Good news.

Comment by Debs on August 14, 2014 at 1:31pm

Marian I suggest you pose this question on www.wigsupport.com this site is based in the USA so the ladies can definitely help you find replacement hair in your area.

Comment by Pam on August 14, 2014 at 10:40am

My hairpiece was done by Rob Davidson-Lamb at Barefaced in Cheltenham Gloucestershire UK.

He has got a website with all his details. He does some things over the internet, and I guess it could be possible for him to order one if you could measure it youself and match the colour, and then fit it, but better for him to do it in person!

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