Replies to This Discussion

Permalink Reply by Airam-FFA on February 8, 2017 at 5:09pm

Hi Kathy

I noticed my hair line receding about 3 or 4 years ago. I kept saying as much to my hair dresser but she didn't seem to think it was too bad. I saw a GP/Dr in Oct 2014 - he said it looked like female pattern baldness. I was in a stressful job and thought that my hair would start growing back once I left my work - It didn't grow
back :(

I asked my GP/Dr to refer me in April 2016. It took 7 months for the referral to come through. Then I was diagnosed with FFA.

I don't have much hair on the top of my legs nor much hair on my arms. Also hair no longer grows between my pubic bone and Caesarean scar/bikini line. My eyebrows are very sparse compared to how they used to be.

I have been given meds since Oct/Nov 2016 when the dermatologist diagnosed FFA: Dermovate Scalp ointment and Hydroxychloroquine sulfate 200mg tablets. I will finish taking these tablets for the total of 8 weeks but really not happy with the potential serious side effects.

From other posts on here, I am not sure if meds have any effect. I think the way forward is diet AIP - auto-immune protocol plus relaxation/relaxation/ techniques.

xOx

Permalink Reply by Christi Q. on February 9, 2017 at 10:59am

I was diagnosed with FFA a few months ago.  I was hit with a LOT of stress for a about three months straight and that's when it happened to me.  The mounds of hair I had had all my life (everywhere!) was attacked and now the hair on my arms and armpits are gone.  My eyebrows are VERY sparse and I have thinning everywhere on my head, but mostly the frontal area.  It's been extremely emotional .  I wake up every morning running to the mirror to see if it all has fallen out overnight.  Ridiculous!  Causing more stress than ever.  It also disappoints me that my body has failed me.  I havent been sick (no cold or flu) since 2009.  Almost 7 years of clean health......and now THIS!  I'm mad at my immune system for failing me.  My doctor has me on Rogaine and Dutesteride.  I take Biotin vitamins, and I'm thinking about starting a Tumeric tonic every day which is supposed to calm inflammation in the body.  Who knows what will help???

Permalink Reply by Airam-FFA on February 9, 2017 at 3:12pm

Hi Christi Q

I feel your pain and anguish. FFA seems to be attacking otherwise healthy people. Stress seems a major factor. People also talk about the AIP - auto-immune protocol diet - not started it yet.

I have been taking turmeric in the form of Golden Paste - I will find the link and post - turmeric + black pepper + coconut oil and water. I still hate the taste - but treat it as medicine - doing me good.


http://turmericlife.com.au/turmeric-recipes-golden-paste/
oXo

Permalink Reply by CurlyK on February 11, 2017 at 6:21pm

Christi Q, I have had the same exact feelings as you. Mad at my body for failing me. For doing something to me so devastating that I have NO control over. It took some time, but I finally came to a point of acceptance and stopped striving to fix it.

I try to eat an anti-inflammatory diet, have removed dairy and gluten and started adding turmeric to my morning protein shakes. While these things haven't fixed my FFA, they have definitely calmed my itchy blotchy skin down not to mention I just feel more alert.

My solution for my hair was to get a hair piece which I am thankful for every single day! The paranoia I lived with every day was robbing me of my life. I now feel like I have my life back to a degree.

Hope this helps!

Permalink Reply by CurlyK on February 11, 2017 at 6:10pm

Hi Kathy! I was diagnosed with FFA last July. I know exactly what you mean about being someone who likes the facts. I wanted to understand what this strange thing happening to my body was all about. To find out there isn't much information/research/hope was discouraging to say the least. This message board has helped me more than anything else - especially emotionally.

While my hair continued to recede backwards, it was also thinning on top back to the crown. I lost my eyebrows, hair on my arms and legs except for a few stray hairs that pop up now and then.

I chose not to go the medical route because I haven't read much evidence that it helps and I don't need to add side effects to my already troubled body. I chose to get a bonded hairpiece - about 1/3 of my current hairdo is my own hair (on the sides and back) and 2/3 of what people see is a perfectly matched human hairpiece. I and my hairpiece get a lot of compliments these days which has really boosted my self esteem. ;)  Sometimes I choose to tell people my story and sometimes I just smile and say "thank you!"

Hope this helps!

Permalink Reply by Minter on February 11, 2017 at 7:28pm

Hi Kathy,

yes, I am experiencing thinning on my crown also- I was holding a mirror up to the top of my head and was not happy with the amount of shiny scalp that I was able to see. In addition to the nearly 2 inch band at the front of my hairline,  I have also lost the hair on my arms, most of my legs-luckily my eyebrows are still here, they are thin but I am still able to thicken them up with powder and a eyebrow mascara thickener sort of makeup. 

It is so frustrating that there is no real reason or this happening, or a way to definitely cure it.  I too have recently given up all meds and just trying to eat healthy and live a good clean life.