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Comment by Let's Solve This on January 10, 2016 at 9:52pm

It has been a while since I've commented on here, although I check periodically and catch up on all the comments. I am saddened by how many more women are being diagnosed with FFA and I continue to think there just has to be an answer to what is causing this disease. Several weeks ago I had another idea that I wanted to bounce off everyone. As I was about to fall asleep one night I realized that the areas where I've lost the most hair (for me, the sides of my face and outer eyebrows) are the areas that are pressed into my MEMORY FOAM PILLOW when I sleep. Crazy thought I told myself, but the next morning I started googling the Internet, and sure enough, memory foam as well as the chemicals used on it, are known to cause allergic reactions and to cause problems with immune systems for some people. Does anyone else sleep on memory foam pillows and/or mattresses? Do you think there could be a connection to FFA?

Comment by steph on January 7, 2016 at 11:41am

Hi all, heres a couple of links about shampoos and hairloss I've just seen. I've been using tresmee for years and wondered if it was the cause of my hairloss. http://wwwtresemmecausesalopecia.blogspot.co.uk/2009/02/tresemme-sh... https://answers.yahoo.com/question/index?qid=20071202014138AAH9kMs I recently saw a trichologist, she was amazing and it was nice to have someone understand and give me advice. The nhs just don't have time and weren't very helpful about FFA. I told the trichologist I didn't want to use steroid cream, she recommended I did use it or at least use an antiseptic mask. At the moment I'm alternating between her homemade antiseptic mask and warm salt water before washing my hair. I'm washing my hair gently and only twice a week now still using dandrazol shampoo (which I find stops the itching) and I'm also using her homemade shampoo and conditioner as im frightened of using normal shampoos and want to avoid perfume or fruit enzymes as they can aggrivate the scalp. She informed me that doctors might say iron and thyroid levels are ok and they are ok for other people but not for someone with hair loss. So I spoke to my doctor about my blood tests again and I'm now taking iron supplements for a couple of months. Iv also recently learnt its best to avoid using face creams too close to eyebrows and hair line as this can prevent growth. Hope some of this helps :-)

Comment by LoriO on January 6, 2016 at 10:18pm

Thanks for the link SJC that looks like the best thing I've seen so far, and you're right, there is a salon in my area!

Comment by SJC on January 6, 2016 at 2:33pm

I wanted to share something I learned today with all of you.  For those who may be interested in an interwoven hair system such as Linda Ellery, but would find it impractical to travel far for initial and maintenance visits, a hairdresser friend told me about Evolve hair systems.  This is also an interwoven system (integrates with your hair, no shaving, no tape, etc...)  meant for volumizing at the crown, yet it looks like it would certainly work with many stages of FFA too.  It is semi-permanent and acts as your own hair (swim in it, wash it, dye it, curl it, etc...).  Another great thing about it is you don't have to travel to a proprietary hairdresser to have it put in or maintained.  Even in my non-cutting-edge state, there are 7 salons who have hairdressers trained in working with the system!   And new salons are adding the product all the time.   If interested, go here and click the Volumizer tab:  https://www.evolvinghair.com.  For those that need something that fits into/doesn't disrupt an active lifestyle, this may be an option.  I have seriously considered Linda Ellery's product and wondered how I'd find the time and money to fly back and forth to either California or New York every couple of months. 

Comment by BBQueen on January 4, 2016 at 12:25am

I heard about Wen products causing alot of hairloss but I'd think it would grow back once one stopped using it. I may have also heard about the flu shot as a possible cause of hairloss. I will not be getting one next year! I just started finastride, with metforium (for insulin resistence and "it works" hair growth vitamin. Praying for a miracle!!!

Comment by SJC on January 3, 2016 at 11:25pm

I've never equated my FFA with dying my hair.  I do, however, have long thoughts about my use of Sambucol/Elderberry Syrup (an immune system booster that is a flu and cold preventative) as triggering/progressing this autoimmune disease.  Also, and I see a lot of buzz about this on the web in a frenzied fashion, I used WEN hair products for a while and then started having major hair loss.   I don't know...if I could figure out why some people's immune systems go haywire, I'd be a wealthy woman! 

Stephanie

Diagnosed 4/15.  48 y/o.  Not menopausal.  Have lost 1 to 1.5  inches at front, and over 50% thinned throughout.  Currently on prednisone pulse to stop a major shed that began in October, Cordran lotion and finesteride 5 mg.  Tried doxycycline (gave me ulcers) and plaquenil (started the second big shed in October) prior to current regimine.

Comment by BBQueen on January 3, 2016 at 8:10pm

Wyobalance- I received a very bad hair dye job that I thought may have triggered it. Interesting that your friend thought that too.

Comment by Elizabeth on January 3, 2016 at 3:58pm

Hi all, I'new to the site I was diagnosed with frontal fibrosing alopecia almost 16 years ago.
I was prescribed & have been using Plaquin since diagnosis. Around 6 months ago small red bumps started appearing on my scalp however in the last month these are now covering my scalp are sore itchy & appear like white head pimples. I have also recently had burning & itching & have now been prescribed protopic.
My hair had previously fallen out as expected in a type of hair band shape around the front of my head. More recently however i have started losing hair from the previous frontal loss towards the middle / crown of my head. I'm wondering if this is the norm with this particular type of alopecia or if anyone else has experienced this?

Comment by Luisa on December 30, 2015 at 5:39pm

Hello Tessa. Upon my first derm and diagnosis the ffa was due to hogh level if stress of my condition of working mother of three little children etc. The following derm, who has reputation in Eu and Us in scalp diseas,prof. Tosti, the cause if the diseas is unknown but most likely due to environmental factors. High level of stress work to get it worse. I am personally fighting it with yoga. Do your treatment,find a doctor you can trust and who knows this diseas and keep on doing your best to smile and enjoy your life.

Comment by MJ on December 29, 2015 at 7:43pm

Tessa,
I think many of us have cited stress as a factor. Do your best to reduce your stress level as I really believe it is the way to calm down your immune response. Easier said than done, I know.

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