Jodie I read some of your earlier posts and I'm curious why your derm has changed your meds from cyclosporin which seemed to be working for you.  Is there a limit on how long you can be on it?  

Jodie I am wondering whether its worth trying it.  Did lab tests show the adverse effect on kidneys/liver?  Did you feel poorly whilst taking it?

Jodie  Thanks for your info re cyclosporin. I have to admit I was put off after reading the info sheet.  With any of these powerful, off label drugs its always a matter of balancing the risk. I am planning to go to the conference in London tomorrow.  I will ask Dr Christos and the others what they think of Toctino and I'll let you know what I learn.  Best wishes.....

I was on Cyclosporine for about two months and had no side effects, but decided to come off it as I was feeling increasingly uncomfortable about being on such a potent drug. It is such a hard question we all have to face: is it worth taking potentially harmful medication for a condition that is absolutely horrible but which is not life-threatening? It is a very personal decision. Initially, I was so traumatized by my diagnosis that I was ready to take anything, but now I am not so sure...

hi everyone,

Donelle, I may have a hair stemcell transplant (the donor area will keep its hair follicles, so you  don't loose it there), which is only done for a couple of years by the hair Science Institute in Holland to my knowledge. I spoke to them this morning on the phone, they will only transplant 50 grafts of hair stemcells  as a test and the costs will be 570 euro. I then have to wait 9 months to see if it stays. They tell me they have doen it now in about 50 or so woman with FFA, but only very recently. 80% of them keep the new hair.  So they  stress out that they really don't know the effects on the longer term yet. So it is indeed expirimental on FFA patients, thats why they will only do it if you take the Cyclosporine.

Indeed Catherine it is such a difficult decision whether or not to take Cyclosporine.

I am also considering to start a diet of eating lots of organic fruits en vegetables and no gluten, no red meat, no sugar and no refined carbs. Has anyone tried something like this?

I will reconsider taking the Minoxidil Donelle,

MJ - how is the Ellidel working out?

There's a great autoimmune summit going on on-line right now...and it's free.  Each day there are a number of discussions with leading experts in the functional medicine world.  The videos are only available for 24 hours, new videos go on-line each day.  If you're interested you can check it out here: http://autoimmunesummit.com/  

Sas Holland, I have been avoiding gluten, dairy, eggs, peanuts, soy, sugar (& artificial sweeteners), & corn for about 6 weeks.  I am also trying to eat lots of veggies & fruits & very little meat.  The area of my scalp that has been affected by the ffa is definitely less red, so I think the change in diet is helping.  As an added bonus, I've also lost weight & my joints are less achy. 

Hi Annie, thanks for letting me know,  that's already a quick result, because I understand it normally takes a few more months to  notice any difference

Sas Holland the hair stemcell transplant sounds fantastic.  Please do keep us updated as to your progress.  This is the first I have heard of it.  Do you have to wait until the disease is in remission before the transplant?

I have been following a diet such as you describe.  I feel much better on it, so in that sense it is working, but not sure whether any difference in hair loss.  But the psychological benefit is worth it.

Donelle, I don't have to wait because it is already very mild or little inflamation as the biopsy showed. So if I strat the Cyclo next week I can have the test stemcell transplant of 50 grafts  after 1 month. But I am still not sure wether to do this, since my hairline recession is not so bad yet, I can still hide it easily with my curly bangs. So I thought maybe I try this strict diet first for maybe 6 months or so (though I find it very strict and I hope I can stick to it, since I am very fond of sweets and red meat and whole grain bread). And when my hairline really starts to show then I can take the test tanasplant, because I hate to take such strong medicine as Cyclosporine A. But then again if I wait till it is really showing, then  I might be to late, beacause then I  have to wait 9 months after the test transplant and then I will need 3 times the normal transplant they told me, with each time 9 months in between. That is  if I want to restore my natural hairline completely from ear to ear.

LInda, I didn't know either that you can have both AA and FFA. I also have no hairs on my arms and upperlegs and my eyebrows were the first to dissapear completely.

I had them tattoed years ago for the first time., which is very satisfying. I am praying that my eyelashes don't start falling out though.

Linda, please forgive me for saying that perhaps your derm simply hasn't had much experience with FFA.  AA is a horse of a different color, and not likely to affect only eyebrows and body hair.  In fact it generally causes devastating hair loss in random patches throughout the scalp hair.  And I don't know anyone on this site whose eyebrows haven't been affected to some degree.  What's more, I think if you started a discussion thread asking about body hair, you'd find a great number of us who have experienced that loss on our arms and legs as well.  I think my eyebrows disappeared first, but I really didn't notice the loss on my arms until there was no hair left standing [obviously it was fairly light].  Perversely, the darker hair on my legs remains just patchy enough to require shaving.  I'd like to take that to the Complaints Dept!

I don't mean to criticize your derm for suggesting you have both FFA and AA.  I just think he isn't aware how common the brow and body hair loss is amongst us.  After all, every MD has to work with a first case of something now and then.  I actually was my derm's first FFA, though she has many patients with other forms of hair loss.  It was my dramatic loss of eyebrows that caused her to suggest a plug biopsy in the first place.  Since then she has researched it well and we discuss options at every appointment.  Actually, it may be an advantage to have an MD who is not yet very familiar with the syndrome, as he/she may be more proactive in searching out options.

Yours was absolutely right to stress taking good care of yourself.  I believe restorative sleep and a positive outlook are worth more than a pharmacy full of medications.  Particularly when paired with a good support system.  I'm speaking from too much experience.  I know you cannot just will yourself to sleep well and wake up feeling good -- it's just not that simple.  But with support from your family, and the compassion and information of the ladies on this site, I believe the day will come, perhaps a few months from now, when you suddenly realize you've gotten thru an entire day without thinking about FFA.  It's a rather cruel disease, and of course I wish it had never happened.  I have hated the days when it took such an effort just to look OK.  One curious side effect many of us have noted is that we cannot stop studying everyone else's brows and hair.  Eventually even that just gets funny when I think how many times Mama said, "Honey, don't stare -- it isn't good manners."

I hope that we can help you find the answers you need, as we boost one another's spirits.  Don't hesitate to air your worries here, and share your little successes as they come.   I truly believe you will begin to feel better about it all, day by day.

Classical Anne - I love your wisdom.  Thank you for sharing your words with us all.  Have a great weekend!

Virginian, it sounds like your experience with FFA is following the typical progression.  It may feel worse before it starts to get better.  But it does get better.  Your MD's right, the hair will not grow back in the areas where the follicles are already scarred.  But there are many ways to slow the progression, and always hope that it will simply burn itself out and be done with.  I suggest you read backwards on this site for a while, getting familiar with our various approaches and successes.  And do a word search [uppermost right of every page] for spironolactone in particular, to see other ladies' experiences with that drug.  In any case, your blood pressure medication absolutely must take precedence. 

Welcome to this helpful site, and best wishes for your success in dealing with FFA.

Jen S, thank you so much for your kind words.

Virginian, spironolactone was one of the first drugs my derm tried. I did grow hair, on the top of my head, while taking it, but could not continue because it made my BP too low. I've achieved about the same new hairgrowth using minoxidil and spearmint, either capsules or steeped tea. I actually have a few new hairs right at my front hairline, which I figure must be from dormant follicles that didn't scar over.

I agree that many derms may not be aware of the hairloss on arms and legs, in addition to brows and hairline, perhaps because patients aren't concerned so don't mention it.. I mentioned it to a derm who specializes in alopecia at a university, whom I saw for a second opinion, and she said it was "interesting". 

Linda, I just went back and read your interesting first post, in July 2013.  Sounds like you do have a very good medical team on your side.  Sorry for the stress and more recent depression you mentioned.  But glad that your latest post says that you're taking one day at a time and handling it.  There are quite a few of us here who would be interested in your derm's latest diagnosis.  It would seem that almost all of us have AA as well as FFA.  Which illustrates what a complicated and poorly understood condition this is.  The proof is here that eyebrow loss accompanies almost every diagnosis of FFA, and that arm and leg hair loss is common.  But I would hope we'd all be spared the emotional trauma of losing scattered patches of hair all over the scalp, as is common with AA.  I have started wearing a wig for certain occasions, because the quality and manageability of my remaining cranial hair is now low.  But I continue to be so grateful that a pretty scarf band still can cover the FFA loss on a daily basis, and gives my spirits a little boost.  Do please let us know if your derm provides further information regarding the eyebrow and limb hair loss.  Sharing thoughts with one another makes this website one of our chief forms of information and support, and I'm glad you're taking an active role in it!

Ladies who have had eyebrow tattoos - don't forget to use a high SPF on them to help prevent fading !

Hi everyone,  here's an update. I spoke to my dermatologist a couple of days ago on the phone. I have decided to go forward with the test stem cell transplant of 50 grafts.  He says it's the only transplant that is suitable for FFA patients, since the "normal or traditional" hair transplant technique is making to large holes in your skin and therefore ruins your skin. My FFA is in remission already, so the biopsy showed.

I need to take Cyclosporine exactly 1 month before the transplant and then a couple of months (I think 4) afterwards. I must make an appointment first with the Hair Science Institute in Maastricht with dr Gho, who will perform the transplant.

I will keep you updated on my progression with it as soon as I know more.

I need to patch up (is that how it's said?)  the tattoos on my eyebrows  first though, since I cannot do this when I take Cyclosporine, says my doctor, because  I have to avoid getting an infection while I am on Cyclo, since it suppresses my immune system.

Has anyone had any success with taking Cellcept ? I am on the brink of this but the side effects are so wide and scary - I can't think of anything in the body that might not be affected !! Thanks !

Hi Rebecca, thank you for your reply, I glad you give me your doctors opinion!

All opinions are welcome.

Yes I know it is very experimental, my own dermatologist  keeps telling me that too. But they only will do a small section first (50 grafts)  to see whether it will fall out.

I am still waiting for the answers from the questions I asked the Hair Institute about on how many women with FFA they have tried this successfully and how long ago that was, so  I still have to make the final appointment to go through with it. They will give me a phone call next Thursday. Dr Gho is apparently abroad now.

I have decided though, if the answers are not too disappointing ,  to try this small section transplant and decide 9 months later (I have to wait that long) depending how it felt, how it looks,  if I will have the real one.

About the  "FFA is still active" part: My biopsy showed that there was very little activity going on at my hair follicles,  and you can see nothing red of flaking at my scalp either.  (thats why the dermatologist gave the green light for the test stemcell transplant at the Hair Science Institute) but it was not  gone completely. Are there members here who's biopsies  at any time showed no activity at all?

Hi, I'm very new here and just wanted to be sure I'm posting correctly on the FFA page.  I was diagnosed in 2009 and decided I could use some support from those who have FFA.  All friend requests will be very welcomed.  Thanks in advance.

Welcome, Marilyn.  You're in the right spot, and we're happy to have you add to our conversation.  Sorry, though, about your diagnosis.  You will find much support and encouragement from the ladies in this group.  Don't hesitate to let us know your questions and challenges, as you most often will find someone here has already been there.

Best wishes in this journey,

Anne

I must admit that after reading all of the medical treatments, drugs, etc. and not getting the results you seek, I am pleased with my decision to simply get on with it, snap in my piece and move on.....my derm told me right away that there is no cure for FFA and I believe it to be true.  Having also being a breast cancer survivor, I have no intention of putting additional chemicals in my body.  My derm says there seems to be a socio economic group who comes down with FFA and there is some research going on.  My worst times are when I am home and not wearing my piece -- embrassassing for my husband (my own thing, he is pretty good about this) and worried about vacations, summer, working out and such.  But everyday for work and for social no one knows and I look damn good.  Anyone who is starting to go through this, start experimenting now with eyebrow makeup and get yourself to a hair replacement person who can fit you with a good piece or wig.  Challenging?  Yes certainly, horribly so.  The end of the world? You may think it, but no, it is not.  Learn to hide it and make yourself beautiful.

I concur with Sad in Chicago.  When I was diagnosed, I spent days looking on the internet for any sign of a cure. I started taking the injections and to my dismay, the hairloss accelerated so I stopped all treatment and started to figure out how to deal with the forehead which was getting closer and closer.   I have been able to work my curly hair in such a way that no one would notice the missing hairline. I am experimenting with soft headbands when I am in the warm climates. I wear sunhats and tell people that I burn easily  since menopause.  I have not yet used any hairpieces. Recently, I was paying more attention to my makeup, clothing and accessories and I too think that I look good. I use a primer on the little eyebrows that I have left and then dark brown and black eyeshadow. I apply the brown first with an eyebrow brush, then put little streaks of black here and there to add dimension.  I put a bit of concealer under the brow and the eye area looks really good. No one has ever asked about my missing eyebrows. It is probably hard to notice with my hair pulled down so low.  I will not put any medication in my body to stop this.  I am actually having fun at the makeup counter now.  I understand that after surviving cancer, you would not want anymore medication. My Mom and my husband died of cancer and I witnessed the amount of medication they used and the side effects of the medication so I stay away from meds.

I too have declined all meds.  I don't want to treat the symptom - I want to resolve the problem; which I see as an imbalance in my body.  I was diagnosed in 2009 and also told there was no cure.  I went through many stages, including:  "I'll fight it", "I'll accept it and live with it" and "what can I do different for my body to stop it".  I finally changed my mindset and no longer think of this as FFA.  To me it is an autoimmune/inflammatory disease that I focus on.  I am researching and making lifestyle changes in line with AI.  I now have a functional medicine doctor and I have found a sympathetic traditional doctor at my health plan who has helped with diagnostic tests (unfortunately he retires in March 2015).  I am basically now eating a paleo diet - this after years of eating vegan/vegetarian.  The first bites of fish, chicken and eggs were very difficult.  My hard-fast rules are no grains (and therefore no gluten) and no dairy (casein especially).  I have reduced sugar and eliminated soy and avoid processed foods.  I am also taking supplements - especially vitamin D (which I tested low in) and an enzyme/pro-biotic with each meal. My flareups are gone - so far.  I use cedarwood and rosemary essential oils topically on my scalp where I have the hair loss.  The cedarwood has helped reduce any signs of inflammation or itching - but since those symptoms are mostly gone now I continue to use the oils as a tonic.  I apply an oil treatment once a week with bhringraj oil - an ayurvedic treatment for hair.  I do this to nourish the scalp and hair. I try to meditate (I'm not very good at making the time) and reminding myself to de-stress. Stress is a big factor in this and other AI conditions. I'm trying to make exercise a priority also.  I am making an effort to remove toxins from my life including plastics, pesticides and chemicals. I have only recently settled on all of this so the next months will tell.  I will repost if there are significant improvements or failures in my protocol.  Best wishes to all of you fighting the same battle.  Take care of yourselves.

Hi Lexi,

yes it's the HSI in Holland indeed. My FFA is in remmission thats why my dermatologist says I can do this, allthough I must take Cyclosporine for about 5  or 6 months. I still did not plan the test transplant though. I still await a phone call of them  with the answers to my questions how many women with FFA have they treated, how long ago was that and how many have kept the hair afterwards for how long.

Also after reading the replies of DebfromCA, Jen, Sad and Rebecca  I have doubts again whether to do this at all. It such a difficult  decision. It's the Cyclosporine that I really hate to take. I don't feel sick now and my receding hairline is not so bad that I cannot cover it with my curly bangs any more.

I can't help you with your pregnancy questions,, sorry, but wish you all the best and hope you don't worry to much, but can enjoy the pregnancy.best wishes!

Hello ladies - please let me know how you have coped with Cellcept if you've been on this. Thanks.

There have been some wise and courageous ladies commenting here.  For the sake of the new folks I'm repeating myself. I, too, rejected all internal medication since diagnosis 18 months ago.  I have been very satisfied with the non-systemic steroid injections, every 6 to 8 weeks, which really kept the loss to a minimum.  But as anticipated, I'm now having a lot of female pattern thinning throughout the top of my head, which is competing with the FFA loss at the hairline.  So, I now have 2 wigs which I love, and find very liberating!  My eyebrows actually disappeared close to 4 years ago.  In the last couple months I have added topical minoxidil to my brows in the morning and was happy to see any regrowth, but way too late to expect a full comeback.   But there are just enough sprouts to make my eyeshadow coloring of the brows look convincing.  Overall, I'm very much at peace with it now.  I wish the same for all of you!

hi Everyone,

I wish more of you uploaded an profile picture, because It would really help to see how others are coping with this. If you have a wig or hairpiece and how that looks or if you still have your own bangs to cover it or how other eyebrows  look with tattoos or make up.

have a nice sunday!

Hi Rebecca, I will probably start a course of Cyclosporine this week, and I was told that I will need regular blood tests. How often do you have your bloods checked? I was also wondering how long you think you will be on the drug (I see your doctor said you could take it long term)? My doctor has suggested that I take Cyclosporine for 6 months then switch to Cellcept.

Thank you so much! Catherine 

Thanks Rebecca.

Pam, I aldo hsve redness and itching while on plaquenil and have cut my dose to see if it makes any difference. If not, I plan to discontinue it. 

Catherine and Rebecca, do you know whether cyclosprine comes in a topical form? I believe it's the same dtug that is in the Restasis drops I use for dry eyes. I'm much more inclined to try something that is not systemic.