Replies to This Discussion

Permalink Reply by Liz on March 15, 2014 at 2:30pm

Hi. I lost about an inch at the front plus one temple with in a year. I have lost about another inch now and the other temple. Total of 2 years for both. My mu has had FFA for about 7 years and has lost 3 inches total. She has never taken any medication. xx

Permalink Reply by PamW San Diego, CA, USA on March 15, 2014 at 7:18pm

By the time I realized what was happening, I had lost both eyebrows, about two inches on my right temple, one inch on the left and one half on the left. I have had some additional loss on the left side, but I would say that it slowed down after several months on Plaquenil. I think most of us have found that the Plaquenil doesn't stop the hair loss, but rather slows the loss. There is also an overall thinning of my hair, and I have noticed changes to my skin and complexion. I find that Zrytec helps me morethan clobetasol for itching and burning.

I was convinced that food had something to do with my itching, burning and discomfort because my scalp is calmer in the morning and the discomfort increases throughout the day. Dr. Christos (who is the doctor in the UK conducting research) said it is a good theory, but it is more likely that I feel better in the morning because of the body's natural cortisol levels. He feels it is more likely connected to hormones than food. However, I have read thar food does influence our hormones.

In any event, all the research says that FFA is a slow progressing disease. Try not to dwell, keep busy, go talk to a therapist to handle the anxiety if you need, but know you are not alone. I ruined a lot, lot, lot of days worrying unnecessarily about my hair.

Jules and Pam I would really love to see photos of your new hairpieces. I can't go to the UK, but if I knew what to look for, I would start my hunt here in the US. Good luck, Jen.

Permalink Reply by MJ on March 15, 2014 at 8:16pm

I was diagnosed in December and when I first went to the derm about a small bald spot high on temple in October, I had not really noticed drastic changes. It was right after the biopsy that I had the quickest loss. I was so stressed waiting for the results. I learned that stress and any surgery will activate the condition and I think that they both contributed to the acceleration. I definitely have had the most loss all around the original biopsy site. I believe it measured about 3cm x 3cm in early January. I looked back at vacation pics from August and I often had my sunglasses pushed up over my hair and did not see any hair recession. I think I lost at least a centimeter on top and a little more than that on the opposite side. The problem that I have is that I never have any outward symptoms and my hair just seems to be slowly going away. So I can't tell when I am active or not. I have to say that since starting treatment, biotin forte with zinc, the new diet, Chinese acupuncture and herbs, and iron supplements for low ferritin, my hair in general seems healthier and thicker, which helps me mentally and helps with hiding the loss so far.

Permalink Reply by sadandunsure on June 25, 2015 at 3:30pm

I think the biopsy sped up my loss too. Looking at pics in early May, there was just thinning in my right temple, I got the biopsy at the end of May and now my right temple is bald. It's sad, I can't wear my hair back in just a month. I'm hoping rogaine will help as the follicle shouldn't be scarred over yet, but it sucks that trying to find an answer made it worse. I kinda wish I still was in the dark.

Permalink Reply by Debs on March 16, 2014 at 6:25am

My hair loss slows down for several months and then all of a sudden seems to shed lots. I have lost a lot more go from my front hairline in the last 3 weeks. I was using hydroxychloroquine sulphate since March 2013 and had been using tetracycline antibiotics since November 2013 so I was very disappointed to still be losing so much. The antibiotics gave me tummy pain and despite changing to another antibiotics and using a probiotic I was not able to tolerate them. I stopped all drugs about 2 weeks ago. I am still using the anti inflammatory diet and supplements plus exercise 3 times a week. I gave it a year using drugs and am now using just holistic methods to look after my overall well being.

In total since being diagnosed 2 years ago I have lost about 1 and a half inches from front hairline and 2 inches at temples. I met 2 ladies at an alopecia support group in the UK a few weeks ago. They have both lost the sane as me. One lady has had FFA for 7 years and one for 2. One had used laser and minoxidil and one did nothing. I was the only one that had used drugs. The progression varies with each of us. This is I think a very stressful part if FFA not knowing how much you are going to lose.

I think we have to look at our treatment options both drugs and non drug like diet and supplements etc.. And use whatever we feel comfortable with and whatever works for us as individuals.

Permalink Reply by Annie on March 17, 2014 at 11:08am

My ffa progressed very slowly at first.  I think I had it for at least 2 years before I went to see a doctor.  I noticed I was losing the little fine, wispy hairs around my face and thought it was just part of aging.  This went on for about a year when my hairdresser noticed that my widow's peak was gone. Again, we both thought it was hormones & aging.  I had absolutely no pain until a little over a year ago when my entire head got extremely tender.  I decided something wasn't quite right and made an appointment with my derm.  I was diagnosed with FFA a year ago.  I started using Rogaine & a topical steroid right away, & have been taking Plaquenil for almost  9 months.  I've noticed the most hairloss around my temples since my diagnosis.  I've probably lost about a half inch on each side.  I don't think my forehead hasn't receded very much in the last year, but my bangs have definitely gotten thinner.  I agree with the other ladies who said the plaquenil doesn't stop the hairloss, but it has gradually slowed it down.  I am still able to conceal my hairline by thickening up my existing hair with Rogaine and help from a good hairdresser.  I remember when I was first diagnosed thinking that I would probably be in a wig within a year.  Well, March 14, is one year since my diagnosis, and so far I'm "holding my own" as my hairdresser says.  Good luck to you.  

Permalink Reply by Classical Anne in NC mountains on May 5, 2014 at 2:57pm

It sounds as if most of us are really only losing moderate amounts of hair, and at a slower pace than anticipated.  For me, it's been 8 months since diagnosis, during which time I've been getting the steroid injections about every 6 weeks.  I am definitely still losing hair -- both the receding frontal hairline/temples, and the sad double whammy of 'female pattern baldness', which means my hair is getting very thin on top, and whichever way it falls my scalp is quite visible.  But at least there IS still hair throughout the same region, however thin it may be.  With the FFA, on the other hand, the hairs are falling out in a gradually receding line, leaving no "thinning" in its wake, just shiny baldness.  Each hair that's gone is gone forever, and it takes its neighbors with it.  The most visible effect is still the loss of eyebrows.  I've been experimenting with various makeup tips for now.  This week, however, I've noticed the eyelashes thinning.  That's the hardest to accept, and the hardest to disguise.  For head hair, we have scarves and wigs.  For eyebrows we have makeup and 'tattoo' pigmentation.  But for eyelashes, we throw the useless mascara away and try not to cry.

As for the speed and results of the FFA progression on the scalp, I would guess I had already lost close to an inch on both temples before diagnosis, and thought it was 'natural' aging. I was almost 64 when it was diagnosed.  Since then, the frontal hairline has eliminated my lifelong widow's peak, and another centimeter or so across the forehead.  The temples have lost another couple centimeters.  But I have to say, I'm relieved and grateful that it's no worse than that!  After reading a little in online medical sites, and seeing some of the downright freaky photos, I thought I was destined to look like a circus clown, with a full head of hair on the back.  I've been assuming that the injections are at least partly responsible for the slowness of the progression.  But maybe this is just normal for FFA, with or without medications.  Who knows what effect I might see if I quit the injections.  For now, I don't want to rock the boat, and am concentrating on the good news that the disease is only moving slowly.  We all know it can't be stopped, or reversed.  But if we can slow it to a pace that gives us, and everyone close to us, time to adjust to the changes, I'd say we're doing alright.  I am grateful not to have Alopecia Areata, or cancer with chemo, where it falls out in clumps, and can lead to total baldness in a matter of weeks.  We have to count our blessings.

Permalink Reply by April on May 6, 2014 at 7:41am

Hi Jen,

I first noticed hair loss about 4 years ago. It was a small patch of hair right In the front where your widows peak is. I didn't go to the doctor at that point because it didn't think it was a big deal I guess,and it never got any worse for three years. About a year ago it started up again and that's when I was diagnosed. Since then I have lost a patch of hair right in the front of my head about 1 inch by 1/2inch and a little bit from the hair line on either side of that. It seems to be affecting the "bangs" area but not the temple area at this point. So yes, I guess it does go very slowly for me. I get UV laser treatments from my derm which help a lot I think. Also, I have a ton of food intolerances that I've been dealing with. I notice that if eat something I'm intolerant to my whole scalp becomes really sore and tender and itchy. I don't know if diet is a factor dfir everyone's FFA but I feel there is a connection for me. Maybe try to reduce inflammation in your system. The medications can do this from what I understand. Other people have had some success with turmeric supplements and anti inflammatory type diets, stress reduction etc. It would be nice if this disease made sense! Seems to affect everyone differently and at different rates. Good luck, Jen: )

Permalink Reply by MnM on June 25, 2015 at 10:47pm

Hi Jen,
I was diagnosed almost four years ago. Looking back I lost my eyebrows over the course of a year out two before i was diagnosed and before I had Any hair loss. The hair loss was very aggressive the first year. I lost about 1.5 inches on each temple. When I was pregnant things slowed down quiet a bit and then became more aggressive after I stopped nursing. I've probably lost another 1/2 on each temple and my front hairline is now jagged. Luckily I have thick hair and can hide my temples. Good luck to you, I know this isn't easy.