Replies to This Discussion

Permalink Reply by KarenGinny - Iowa, US on February 17, 2013 at 10:06am

Hi, I was 45 when all of this started for me and am pre-menopausal too. Most of the women diagnosed seem to be post-menopausal. I have been on a low dose birth control for the 6 years because I was having very heavy menstrual cycles and it was making me anemic. Since I'd already had a tubal ligation I don't really need it other than to keep my cycles under control. I don't know if the hormones are a cause of the FFA or not. I don't want to be on the birth control forever. I have other problems with high blood pressure and low thyroid and take too many meds already. I'm not currently on any rx meds for the FFA. Just clobetasol liquid for my scalp when it gets itchy, but I don't use it regularly any more. My hair doesn't seem to be getting worse, mostly just staying the same for now, but I have lost quite alot at the hairline and it's thin in other spots. I just try to style it to hide it and wear a hat outside if I need to. - Karen

Permalink Reply by Alice on February 27, 2013 at 9:27am

This discussion reminds me of a book I read before I was dx'd w/ FFA titled, "Calling All Invisible Women" by Jeanne Ray. The premise of the book is that middle-aged women were becoming invisible, but their husbands and children didn't notice it. The affected women discovered that they had all taken the same three drugs - for mild depression, hot flashes and something else, which had caused their invisibility. They got formed a support group, meeting for free at hotels by taking off all their clothes so no one could see them. Instead of becoming invisible, we are losing our eyebrows and hairlines and would like it if nobody noticed. I wonder if there is a common cause?

Permalink Reply by Kristen P on October 13, 2014 at 11:04am

I think it started in me when I was about 33, so I might be the exception to the norm? I did have an even-rarer skin disease when I was young (bullous disease of childhood) and was on aggressive medication for about a year or two. Apparently the dermatologists told my parents "We have no clue what's in store for her skin..." Maybe this is what they were talking about, and why I got it at a young age!

Permalink Reply by Debs on June 14, 2013 at 4:00am

Hi Carol, I am taking the plaquenil twice a day too. I take mine with breakfast and then at night with my dinner. The patent on plaquenil has run out so other companies are able to market generic versions of hydroxychlorquine sulphate, the drug is the same but the formulation can give some people upset tummies. I live in the UK and have found a local pharmacy that has plenty of plaquenil in stock. I have not tried the generic but I just stick to the plaquenil just in case the other brands don't agree with me.

Carol, it took me a whole year to get my head round this condition and even now I am still in shock some days. I does get better psychologically but I am afraid it takes time to run through a whole gauntlet of emotions. I have only told my mum, brother and a few very close friends. I don't often talk to them about my FFA because it is something they can't understand although they are sympathetic. I have a friend that has a medical condition that left her leg badly scarred, I do discuss my FFA with her because she lives with a disfiguring medical condition too so she can understand what I am trying to cope with.

Carol, if you can find ways to 'normalise' your appearance as you lose hair that will help a lot. I have lost quite a bit of eyebrow hair, so I got my eyebrows tattoed. I have eyelashes but they are quite sparse on the lower lashes, I am getting eyeliner tattoed in a couple of weeks time. It is expensive to keep oneself looking the same as before you had FFA but it is possible to maintain a nice appearance you just have to work harder at it.

We are all in the same boat in this group so there will be great advice from other ladies on here.

Take care now, Debs xxxxx

Permalink Reply by Michjo57 on June 15, 2013 at 1:35pm

I also had permanent cosmetics with pigment and not tattoo ink. I found a great person in Denver and she did my eyebrows and eyeliner. I lost all of my lower eyelashes and have a few upper eyelashes. The permanent cosmetic made a world of difference in my self confidence. My eyebrows are called hair strokes, so it looks like hair growing, not just one swipe of an eyebrow. I can get ready to go in a matter of minutes now. I hated trying to do my eyebrows. My hair loss started advancing pretty quickly all of a sudden. I have to wear a wig. If you have to go through this process, research wigs on wigs.com. They have videos about the wigs. Also, don't go cheap. A good synthetic wig costs about $350, but you can get them on sale. I bit the bullet and bought a Follea human hair wig. Expensive, but it comes so that you get it cut and styled like your own hair. The self confidence I gained from it, was well worth the price. I got the gripper cool. Anyway, it is an emotional roller coaster. I started using Doterra essential oils for the emotional aspect because I am done with prescription meds. The side effects aren't worth it to me. By the Grace of God I have gotten through this. It will be a year next month. I wish you all peace with this. It will get better.

Permalink Reply by Debs on June 16, 2013 at 3:30pm

Michele thanks for your positive words. I am also wearing wigs to work and for social events when I need to look smart, I wear a buff or scarf at other times. Your Follea is a super quality wig, I am pleased you are getting your confidence back now, it has taken me 18 months since my initial diagnosis to start feeling like my old self. All the best and take care now, Debs xxxx

Permalink Reply by LTown on June 27, 2013 at 9:21am

Michelle, Has the Griseofulvin and minocycline helped you?

Permalink Reply by Alice on July 6, 2013 at 8:19am

April, even if you are nursing there are some systemic things you can try. Many of us seem to be having some positive response to turmeric, ginger and oolong tea. Unless these upset baby's tummy, they should be quite safe. Another natural, topical remedy that may help is tea tree oil, either in shampoo and conditioner or just spplied to the scalp. I think these thongs have helped me more than sny of the prescrptions I've tried. Good luck to you.

Permalink Reply by April on July 6, 2013 at 9:21pm

Do you make your own tea or is it store bought? How many times a day do you have it? Definitely interested in trying...thanks!!

Permalink Reply by Jennifer on July 7, 2013 at 8:43pm

Hi Michele,

I actually saw Dr. Norris a couple years back. At the time, I kept the appointment just to see if he had anything new to share, but my hair was already growing back and he said just to keep doing what I was doing.
Unfortunately, it appears I too have developed what my dermatologist calls alopecia ophiasis. He kind of explained it to me, but what I most remember is that it is very hard to treat. I actually see him tomorrow and will ask about a potential underlying fungal thing.

My question for you is other than the Nizoral, what else do you use for shampoo/conditioner?

Permalink Reply by Debs on July 8, 2013 at 4:04am

Hi Jennifer, I used the nizoral shampoo for a few months last year, I have since swtiched and use a very gentle organic shampoo that I buy online in the UK. I found that using a strong shampoo like nizoral on my scalp was too much and I now take the oppositve approach and use only my organic shampoo, I don't condition or colour my hair... I put no styling products at all on my hair and I really feel this is right for my body. I also used to wash my hair every day, I now wash it every 3/4 days. My scalp feels better doing less.

Best of luck when you see Dr Norris today.

Permalink Reply by Classical Anne in NC mountains on May 5, 2014 at 2:21pm

Jennifer, I am intrigued by the possibility of a tie with underlying fungal infections.  When results from my scalp biopsy came in last year, my Dermatologist was disturbed about the FFA, but she was absolutely flabbergasted that I also had "tinea capitis" -- ringworm of the scalp.  According to her waiting room, she has a rather large practice, mostly 'mature' adults, and she had NEVER even heard of someone my age [63] having ringworm.  We still don't know where that fungus came from, but the fact it was diagnosed on the same hair plug biopsy as FFA should tell us something!  I of course was put on a short term antibiotic for the fungus, and I suppose it's now clear [how would I know?!].  Additionally, I have had "tinea versicolor" since I was a teenager -- a skin fungus mostly on my chest and upper back -- which comes and goes for decades now.  I have a topical Rx lotion for it which completely cures it [to the naked eye], but it always comes back in the spring and summer.  Have you found any more recent research on a potential connection?

Anne

• ‹ Previous
• 1
• 2
• 3
• Next ›
• Page