Replies to This Discussion

Permalink Reply by PamW San Diego, CA, USA on April 2, 2018 at 11:53pm

Please try to stay calm.  I remember my first few months after diagnosis, and I was absolutely panicked.  The only real way to know for sure is by a biopsy.  A doctor who only saw one patient in 15 years, may not be your  best bet.  I urge you to contact CARF and see one of the derms on their list. 

Most women have eyebrow loss and have lost hair on arms, legs or underarms as well.  Also, prednisone is a very powerful drug and not effective for long term use.  FFA cannot be cured, but it can be controlled.  

Best of luck to you!

Permalink Reply by Plf on April 3, 2018 at 5:51am

• Well said Pam, definitely seek a second opinion, and unfortunately you have to I vest some time in researching FFA...if that is what you have, good luck & thinking of you,

Permalink Reply by Beez on April 3, 2018 at 10:55am

Hi BubbaL,

So sorry to hear you've been given this rotten diagnosis. You at least got a fast answer....many of us bounced between docs for years before getting the right diagnosis. Most FFA sufferers have eyebrow loss, many have arm and leg hair loss. The hallmark sign is regressing frontal hairline usually in a 'motheaten' pattern with some lone hairs left. Scalp irritation is common. The skin after hair loss is shiny and smooth. Some lose hair above ears and a few even along the nape of the neck.  Most of us recall strange rashes or irritations prior to the onset of FFA although no doc (including a guy who specializes in this) ever asked me about skin issues. Many people on this website say they have at least one other autoimmune disease as well . Not sure if that is related and I haven't seen anything in the literature about it. 

Prednisone cannot be used safely long term. There are other steroids, both topical and injectable that are used in FFA. Many docs start a round of antibiotics (e.g., doxycycline) or the anti malarial drug hydroxychoroquine which can intervene in some autoimmune diseases ( which by the way....To my knowledge, FFA has not yet been officially categorized as an autoimmune disorder). Some other topical treatments are minoxidil, eladil, protopic. . Some patients are also on finasteride. Many say ' the earlier you start treatment the better it works.' I am not sure about that either because with all of that said, nothing has worked permanently and nothing has worked in all people with FFA. It's is not curable and is poorly understood.

Still considered a rare disease, it has been increasing in recent years. We all hope that means more awareness and more money given for research.

So...welcome to our on-line community. Some days it's very helpful and hopeful and other days it's downright depressing. But we are all in it together and you'll find tremendous commraderie and support here. Good luck to you in your treatment whatever it may be!

Beez

Permalink Reply by BubbaLu on April 6, 2018 at 4:27pm

Beez,

Your reply was particularly comforting to me . . . not because it solved anything for me today, but gave me hope that one of these treatments could postpone the disease.  And, it helped me feel like I'm not alone.  

I have not had the biopsy, but I do go back to my doctor next week and she may very well have one done.  But, I have no doubt this is what I have, all the symptoms are there.  Eye brow thinning, underarm and leg hair loss, and about 9-12 months ago I began having hot red patches appear on my cheeks.  They would flare up for about a week, dry out and the skin would peel, then my cheeks would look very shiney and smooth until it flared up again, usually 4-6 weeks later.  My dermatologist at that time said it was probably rosacea or some general dermatitis.  I thought it was a reaction to skin fillers (Juvederm) I had injected 10 months earlier.    I wonder if there have been any studies about fillers being related?

Permalink Reply by Torgal on April 15, 2018 at 9:25am

Sorry to hear about your diagnosis. I was diagnosed a year ago and had lost a lot of of the middle part of my eyebrows. My dermatologist said to put Minoxidil on them every night which I do religiously. Anyway my brows have grown in quite a bit. They’re not las thick as they used to be but the bald spots are gone. I highly recommend using it. If you wait till your brows are completely gone, they won’t grow back. 

Good luck!

Permalink Reply by Ellen on April 16, 2018 at 7:55pm

All the replies you've received are correct.  This is an elusive disease to both patient and doctors.  

I personally am on the generic to Plaquenil, Hydroxychloroquine.  Have been on it since last June and it has stopped the process. Apparently, it's not really a good drug to be on. My doctor told me nothing topical works, because your own cells are attacking your hair follicles.  Those little red dots indicate the killing of those follicles.  Like someone else stated.  They will not grow back.

 I had to have an eye exam before they would prescribe the Plaquenil.  Pretty scary, huh?  This coming June Iwill get off of this med for a time to see if the hair falls out again.  I'm hoping it works.  I don't know what I'll do if it doesn't work.  

FFA is an autoimmune response, not a disease.  You may have a lot of inflammation in your body which encourages FFA.  You might try to find out what causes inflammation in your body, foods, etc.  However, there is no natural means, that I know of, that cures FFA.  In my investigation, I found an ingredient, Phenoxyethanol in shampoos, facial creams, etc. that causes cancer?  It's a preservative that came out in recent years.  Funny how FFA was only noticed in recent years, in think in the 1990's.  Do your research, you'll be astonished at some of the things you will uncover.

I'm a year out from the "introductory hysterical how can this be" stage.  And I still have a lot of hair.  So I'm very calm about it.  In the end, if my hair falls out, I'll get a wig.

This is just me.  Everyone here are taking different medications.  Find a doctor that is familiar with the disease.

Best wishes,

Ellen

Permalink Reply by BubbaLu on April 16, 2018 at 8:08pm

Thanks, Ellen, for your reply.  Good to know it has stopped for now.  

I found a very thorough article about FFA on Pinterest, of all places.  Look for the FFA Board.  It stated that in 1994 there were 5 women in Australia diagnosed with this disorder.   That makes it a pretty recent discovery.  

Tonight on national news they were talking about a new drug that fights autoimmune cells for lung cancer - an experimental drug.  It gives me hope!

Permalink Reply by Ellen on April 16, 2018 at 8:13pm

Wow!  I want to find info about that new drug.  I can never figure out how to work Pinterest!

Thanks for letting me know!

Permalink Reply by BubbaLu on April 16, 2018 at 8:24pm

Get the Pinterest App, there is a search magnifying glass, type FFA.  You will find the page.  Lots of articles in different languages

Permalink Reply by Ellen on April 16, 2018 at 9:05pm

I do have the app.  Okay, I'll try to use it. ❤️

Permalink Reply by Ellen on April 16, 2018 at 9:35pm

OMGosh, it's all in one place on Pinterest!  I wish someone had mentioned that before (maybe they did).

Thanks SO much!

Ellen

Permalink Reply by Afraid on April 26, 2018 at 2:19pm

Hi Ellen 

fantastic to read that plaquenil has been successful for you.  I’m taking it too.  I just wondered how long it took for it to halt the progression of FFA? 

Many thanks 

• ‹ Previous
• 1
• 2
• Next ›
• Page