Replies to This Discussion

Permalink Reply by Christi Q. on March 9, 2017 at 2:16pm

I was diagnosed with FFA just a few months ago. I am 58.   I was really in denial since I have had amazing, full hair all my life.  After I started losing all the hair on my arms/arm pits, all along my hairline, and most of my eyebrows, I really started paying attention.  I resisted all drug suggestions and DEFINITELY the scalp injections....but, have finally caved in to Rogaine and Dutesteride.  Not seeing any difference yet, but it's only been three months. I truly believe this had everything to do with a horrible stressful year (that's when it all started) so I am desperately trying to de-stress my life (which is nearly impossible for me - type A personality) .  I try to absorb every single piece of information I can get my hands on.  We ALL are desperate for a cure.  I really hope mine burns out!  Good Luck to you.

Permalink Reply by NatalieW on March 9, 2017 at 3:48pm

Hi. I'm so sorry to hear that you are only 31 and have been diagnosed with this condition. It certainly is weird!! I am 41 now, but was diagnosed at 38 and it had been there for a few years before that.

I believe my trigger was a series of miscarriages and an ectopic pregnancy that I was given Methotrexate for... but I'll never really know. It was a very traumatic time for me and I'm sure it either caused, or triggered a dormant condition.

Unfortunately, the very nature of FFA means that there really isn't any regrowth. I am sorry to say that. I had huge hope when I first starting Regaine as I saw these little white hairs sprouting, but they never developed and fell out some after. The biggest advice that I'd give you is look at your diet and reduce your inflammatory substances. I have always noticed a reduction in inflammation when I cut out gluten from my diet, but I just started Kim Beach's 8 week diet and exercise programme, and my husband said to me last night "your scalp is actually white" (instead of being pink or bright red at the frontal hairline). And good God, it actually does look a normal colour. It's hard being so strict with food, but if it keeps my hairline looking more normal, then I'm all in! 

Good luck, it really is hard to get your head around, but there is great support in this group. Sending you hugs from NZ, Natalie

Permalink Reply by jmh485 on March 10, 2017 at 2:01am

Hi akb

We have very similar stories. I was diagnosed at 30, now 32 next month. Pre-menopausal. I did go through a highly stressful time in the 18mths prior to diagnosis. I already have existing auto-immune issues (coeliac disease). But also, I had use two treatments on my face prior to FFA appearing. One was Efudex to eliminate pre-cancerous spots on my face (squamous cell carcinoma) - essentially topical chemotherapy - and laser treatment for rosacea.

I have now been undergoing treatment for approximately a year. I was put on Plaquenil 400mg a day and varying dosages of prednisone and injections but the steroid tablets made me unwell. I started in Clobetasol mid-2016 and then in about October as the inflammation was starting to respond to the Plaquenil/Clobetasol medication, I was put on 1mg Minoxidil and 100mg spironolactone to encourage hair growth in follicles that were completely destroyed at this stage. Fast forward to now, my FFA has stabilised, but I have lost a good inch off my hairline with evident scarring and sensitivity in the area. I have no visible inflammation and I have had hair regrowth in areas only mildly affected which is creating some density but it's still patchy and I still need to wear headbands. The minoxidil/spironolactone cocktail is not for the faint-hearted. I struggle with this and do not have the best health due to side effects.

Fast forward to now, my FFA has stabilised, but I have lost a good inch off my hairline with evident scarring and sensitivity in the area. I have no visible inflammation and I have had hair regrowth in areas only mildly affected which is creating some density but it's still patchy and I still need to wear headbands. The other kickback is that the rest of my hair on my head is growing too and is healthy.

The minoxidil/spironolactone cocktail is not for the faint-hearted. I struggle with this and do not have the best health due to side effects at times. The whole process takes time and there are days even now when I just want to chuck it all in.

All the best in your treatment and keep on researching and asking questions. Doctors and specialists still don't know a lot about this condition and what medical, cosmetic and psychological support may you need.

Permalink Reply by Plf on February 7, 2018 at 4:03pm

Hi jmh, thanks for your brave story, I am waiting on a consultation with a pharmacist re commencing drug treatment for FFA.  Like you the specialist has prescribed spirolactone and Minoxidil and dutasteride.  I am at the cross roads as to just accept the disease or start these meds which seem to have  lots of side effects.  My friend s whom are nurses really think forget meds due to their side effects and wear a wig when the time comes..whilst this sounds sort of ok..it feels very brave..and scary.

Permalink Reply by Will Be Healed on March 10, 2017 at 11:14pm

Welcome to the site. I was diagnosed with FFA in 2013 when I 35, although I have been going to the doctor since I was 32 complaining about hair loss and wasn't diagnosed until 2013. I too was in denial when I was first diagnosed, so I worked to change my diet first. I avoided foods that were anti-inflammatory. It was hard to stick with it and even then I have not seen a difference. I still saw the inflammation on my scalp (red bumps), itchiness and the hair loss. Then I started scalp injections which created more shedding for me and were very uncomfortable to go through. Then I tried a topical called Protopic, which was so hard to use because it was so thick and greesy. I saw a homeopathic doctor and began taking Moducare. I once I took that two smal bald spots on the top of my head filled in. I didn't see much more results than that. I then decided to take Plaquinil and have been on that for about 2 years. After 6 months, the inflammation and itching went away. I did not see more recession on the top and I did experience hair growth on my temples and top of my hairline. Since my sides continued to shed, I decided to take finasteride and have been on that for 4 months. I have not seen growth as a result yet, but I have noticed less hair shedding. Overall, I lost close to an inch on my top hair line, my sides are sparse and have about 1 inch by one inch bald spots above my ears. I can still hide the loss on my sides, but windy days reveal the issues I have. I do wish that I would have taken Plaquinil sooner and maybe I would not have receded by one inch.

When I first noticed the hair loss, I just had my second child and I was experiencing tremendous stress due to working an already stressful job and now having two children to take care of. I also wasn't getting support from my husband, which created even more stress for me.

I recently saw a doctor who is a specialist in hair loss and understands FFA. She is actually doing a study on FFA. She told me that she thinks the condition is due to hormonal and environmental factors. She believes that it could have been caused by something topical, but she is not convinced that it has anything to do with sun block, although she isn't ruling it out. When I first noticed the hairline issues, I was using Oil of Olay ProX with sunscreen. Since I was diagnosed, I stopped using this and turned to more natural products that I put on my face.

I am grateful for the hair growth I have experienced and no more recession. When looking at pictures of myself from over the last few years up until now, I can see a difference in the fullness of my hair. I really am hopeful, due to my faith, that I will see the bald spots fill in.

Permalink Reply by MnM on March 17, 2017 at 4:03pm

Hi! I was diagnosed at 29 after a stressful time in my life. I was working full time and in grad school full time. I have not experienced regrow the, however the loss has slowed down. I have had two kids since my diagnosis and during my pregnancies my FFA was very "quiet." My mom was also diagnosed with FFA about six months after me, however her. Axe is less severe and hers has burned out. I think there my be a genetic link that makes people predisposed to it and under the right conditions, such as stress or environmental, it comes out. I can't believe how many pre-menopauseal women are being diagnosed these days! I hope they stop fretting to this as a post menopause disease.

Permalink Reply by Rose on September 26, 2018 at 9:42am

Hi I agree with you I’m about to turn 24 and I have had it for a couple years I always thought it would stop or no way nothing could happen but it’s gotton very bad and noticeable now. 

Permalink Reply by Jean on February 8, 2018 at 5:01pm

Although I've been an avid reader of the discussions, I haven't contributed for a couple of years.  I just wanted to report that after about 10 years, my FFA has finally burnt itself out - or at least I'm in remission!  The steroid lotion and shampoo I've been using, made my thin hair look like 'candy-floss' and I made the decision to stop all medication a month ago, with the result that already, my hair is more shiny and less fly-away.  I've probably lost about one and a half inches of hair from the front and sides and although I've got a couple of nice wigs, I can just about get away with a short hairstyle (as long as the wind doesn't blow my hair up at the front!)

Please don't give up hope - in time, this terrible affliction will eventually cease.

Good luck to you all

Jean

Permalink Reply by AnnieMay on February 8, 2018 at 9:59pm

Thank you for your message! I'm having a bad day and really needed to hear this!!!!!!!!

Permalink Reply by Plf on February 9, 2018 at 1:47am

Thanks Jean, great to hear some good news, 10 years seems forever, hang in there Annie may, your not alone, I know that doesn't help much, hope you have something nice planned for the weekend, take care