YouTube is the best! Here's a great video about temporary eyebrow tattoos in case you haven't seen it. https://www.youtube.com/watch?v=_KRKyyZABGY

Pauliegirl, I was reading one of your previous posts where you said you had received the diagnosis of scleroderma. I wondered if the rheumatologist prescribed hydroxychloroguine(plaquenil) for this, as my husband was also diag scleroderma about 18 mths ago & his rheumy has put him on plaquenil. Or were you
taking it for the ffa before Scleroderma was diag. And
do you think it has helped for either condition.????

Hi everyone I have followed your discussions but have been so busy. 

Despite having changed medicines with Dr. Famous Man in Paris, (he of the large hair-follicle trophy poised prominently on his desk, next to the pile of books he's authored), I am losing hair as fast as ever. I am disappointed, having hoped that a change in cortisone and tetracycline might slow things down. Nope. 

I don't feel, for me, that I can tolerate making drastic changes in my diet. I eat healthfully, I don't eat a lot of meat or sugar etc., and when I cut out gluten it made no difference (but I felt deprived and grumpy). I admit to a Coke Zero issue, for which there is currently no 12-step program (if I were motivated I'd start one, but I'm not).

This morning I woke up to my ever-larger forehead and am worried about the future. But as I've said before, life is too short and there's too much I want to do to worry about special foods and diets, having injections, etc. etc. I just can't deal with it psychologically. It's odd to say that it may be easier for me to deal with losing my hair than to run around trying methods to keep it, but that's where I'm at today. 

This is absolutely not to judge anyone who tries many things to slow down/stop the hair loss. I really admire that. But I know for me I just have so much mental energy I can spare, and I need to keep things easy and simple - as we say in French - "ne pas prendre la tête" with this problem. I only have so much space in my head (and less and less hair obviously). 

I think I'm also lucky in that my eyebrows are sticking on my face okay, and my scalp feels weird but I don't have any pain per se. That rhymes. 

My second son has this idea that Irish people have large foreheads and so now I look Irish. I have no idea where he got this from, and no, I'm not Irish ; )

Have a good weekend,

Hi all,

Just a question. I thought with this disease u don't have any hair growing in the follicles anymore. But I have baby hairs all over. Now I'm confused and wondering if this was instead TE? I read that the number 1 way to diagnosis was no hair at all remaining in the pores at all? 

Sooooo confused. 

Lynn555 it is confusing! My derm told me it is possible for the hair back but I have read on here where other doctors have told their patients the hair does not grow back. May be check with your doc and get his/her assessment on the growth? I would be interested to hear what they say. 

Ammie,  it takes a week or two to get added.  

MJ

Well said @HBW I’m where you are. I’m reading this blog and the ladies on the FB group. All the drugs seem like Hail Marys with the hope the patient may be one of the lucky ones that sees some improvement using this drug, or that one or this one. All the while they are enduring bad side effects now and potentially some later in life. I keep reading, “if caught early” drugs can help but this disease is insidious and it has a hold of you years before you notice. Does that qualify as early? I doubt it. I’m happy for those who have had sucess on the drugs. On bad hair days, I question whether I should have taken something but my other heath conditions trigger serious side effects with all the drugs they suggest. I had to be logical and practical. Researchers really need to pin down the how, what and why of FFA. When that is done and understood entirely I’ll take any proven treatment that they know will stop the process. Till then, I’ll keep my hair short and when I can’t hide it any longer then I’ll get a wig. Currently, my widows peak is retreating on the left side. I go to the Derm in April and I want her to evaluate the scaring and pattern of loss. I know I’ve lost a lot all over since I saw her last year, fun times! 

HBW & Illustr8r, my headspace is in same place, everything you've said is where my thoughts are....the psychological aspect of dealing with this day in day out is hard enough....and I have resisted all treatments. To go from one to the other, the next & so on, finding that it seems to be if it slows down, the
research trials say i's the drug that helped, but
noone really knows for sure...if it's the treatment or
the disorder travelling the path it would have
anyhow!!??....I understand the need for some to try all they can to stop it, but I agree, my mental energy is exhausred enough without taking treatments on offer & continual dissapointment when they don't help the proplem....I have sometimes been in a quandry over whethernto 'take or not' treatments; the whole senario can really do your head in (no pun intended)

An article titled Lichen Planopilaris: A therapeutic management review A case Report (jaad 2015) highlights the case of a 40 yr old female with a 20 yr history of lpp & her tortuos journey of treatment regimens; I feel exhausted just reading what she has been through....if the researchers came up with a highly
effective proven drug treatment that actually worked & didn't need to be taken long term I'd be there in the front line....the disorder certainly needs more attention by researchers to find effective solutions; a difficult road for all of us whether we choose 'to treat' or ' not to treat'

need to be taken for rest of my life I'd jump on it...

Jules Australia, I was put on the plaquenil when diagnosed with FFA 1/16. At that time I did not know that I had scleroderma, CREST syndrome,5 though (the “light” version of scleroderma) and actually x30 yrs. [A chicago rheumy did labs in ‘88 after my first ANA (a diagnostic test for multiple autoimmune diseases) was drawn (and way high) due to Raynaud’s; that rheumy came back and said I didn’t have Crest/scleroderma and I was like yayyyy and went on my merry way.  While I was looking at my ANA titer per someone’s request on this blog last August, I re-visited why was my ANA showing I had Crest if I didn’t?? I googled it and went through the list of symptoms and I was like yep, yep, yep and realized I DO have Crest.]

My hairline was stable from diagnosis until 4/17 (about 1.5 yrs) when I started inflammation and more loss at the front/top. During that time of plaquenil when things were quiet I also used topical steroids in various forms on and off, mostly on. I was iron deficient so got on iron and boosted my D3. As far as scleroderma, Raynauds has been my biggest problem and it seems to have gotten worse over the past 2-3 years. The question mark will always be would it have been worse had I not been on Plaquenil? I wish I knew and could tell you. What I will say is that every physician, including ophthalmologists, has said they are not overly concerned with long-term eye issues, as long as a yearly eye exam is done to catch the rare side effects from it. 

Looking very forward to my first functional med Dr visit this week. I will let you know his take on th plaq. I wish all the best for your husband. Scleroderma is another “rare” disease whose little club it stinks to be a part of! 

Thanks, MJ! I appreciate the update. I will be more patient. LOL. 

Thanks or your reply Pauliegirl. I'm sorry you have scleroderma to deal with as well as ffa; hopefully it will stay mild for you. Graham (my husband is under care of an opthamologist for regular eye checks) & tolerates Hcq well. He had mild signs of raynauds for a couple yrs (white or blue fingertips & tingling when cold)....has regular eye check with opthamologist. The Doctors seem to offer all same drugs commonly used to treat autoimmunine flammatory diseease,lupus,scleroderma rheumatoid arthritis etc for lpp&ffa, simply because it is inflammatory & suspected immune mediated, even though proper controlled evidence-based studies on the effectiveness of these drugs specifically for treating ffa/lpp patients, seems to be lacking.....!!?

Cold)prior to diag in Nov'15 (but we didn't really know of raynauds back then)...main sympton was swollen hands & espec fingers. He has yearly eye checks with opthamologist.

cold - but had not known of raynauds at that
stage)before his diag Nov/15...his other main sympton was

swollen fingers on both hands for 12 months prior
to diag, and increased raynauds, espec when cold. It seems most of the drugs offered for ffa/lpp are pretty much those used to treat lupus, scleroderma, rheumatoid arthritis (inflammatory diseases)amongst others....not so much from evidence based research,

Jules Australia, you betcha and thank you for yours! I’m glad because I think it sounds like your Graham has a mild case also. Yes, pretty much just treating symptoms for these autoimmune diseases. After I figured out I really did have Crest, since the docs I had seen here had pretty much failed, I decided to go to a scleroderma center. Flew out to John’s Hopkins where years ago we had an excellent experience for my son’s rare eye disease surgery. I wish I could say I had a similar experience in the scleroderma clinic! It was pretty bad. The younger female physician who evaluated me wasn’t even sure I had sclero. Omg! Duh! And she seemed pretty bored by my mild symptoms. What a waste of my time and money to go there!

Anyways, all they have seems to be treatments as you say. What I am fascinated by via my own research, as I mentiined in that terribly long post :/ ,  is the whole relationship to gut health/leaky gut. It makes sense to me with all these autoimmune (and other) diseases on the rise. I am 2.5 weeks in on the AIP diet. While I can’t say I have had any changes in the Raynauds (and yep, I have the swollen fingers now also), my FFA inflammation at the top/front of my head is almost gone. Haven’t seen that in nearly a year. Now the Raynauds has been happening for about 34 years, so for it to resolve or reduce quickly would be less likely.   Sure, I’m on a plethora of medicines and supplements, but the scalp quieting just seems to be coinciding with this diet change. I miss lots of food and drink but am learning some great substitutes and eating healthier than I ever have in my life lol. I had listened to this Dr Amy Myers webinar on reversing/halting autoimmune issues and it was encouraging. If you’re interested, I can share what I learn at the functional med Dr appt this week on the scleroderma as well as any thoughts he might have on ffa. 

And PS for those of you who are not taking whatever meds or making whatever diet changes, I completely respect it! I am pretty sure we all feel this way. We are all on this similar journey but yet as individuals doing what is best for ourselves. 

Thx again pauliegirl, I would be interested in any new info you might have on either disease,...would be appreciated. I'm glad that your ffa symptons seem stable, whether from AIP diet or otherwise. I have seen many others here who have tried it without much benefit, so who knows, maybe it's coincidence or maybe it is beneficial to some & not others....I agree that there is quite possibly a connection between some conditions,espec autoimmune & gut health. I have always eaten really healthily & exercised much of my life (nearly 60)....so I think there is also most likely genetic & hormonal connections involved....A strange observation....I always used to prefer the warmer weather to the cold & Graham vice versa....now I have a disorder (lpp/ffa)that is aggravated by hot humid sweaty climate (discomfort with scalp itching tenderness etc)& Graham's scleroderma, partic the
Raynauds syndrome is aggravated by the cold. Also what is it with many of the Doctors/Specialists who are misdiagnosing or dismissing our suspicions of the disease we feel we have after many of us have come to the conclusion from endless research; even when we had never heard of the condition prior to our symptons. There are many intelligent women on this forum who appear to have the same story....diag themselves correctly before biopsy from researching....way ahead of the often slip slop guessing by Doctors &/or their lazy cop-out remarks like "oh, its age related, most women have some hairloss in peri or post menopause" bla bla & so on......just as it seems you figured your scleroderma diag way before it was confirmed....but we rely so much on the researchers to find a CURE for many of these rarer conditions....hopefully they have the answers well before our children reach our age!!
bla"

Please I need advice about Protopic ointment; do I apply it only on eyebrows and the outer hairline, or to the entire scalp? Do I wash it off after some time or I have to leave it on?

About Elidel cream, does it really help to regrow eyebrows?

Pascal, Elidel helped with mine! They were only starting to thin (and I had a bit of a hole in one of them), but I think the Elidel arrested the loss and filled in some missing parts. They're definitely not as big as they were before, but I am hopeful that maybe they will be with time. 

Thank you @akb, I will try it also; I've lost almost all eyebrows but it's worth trying to keep what remains.

I had a good check up with my dermatologist this week. She agreed that my hair loss seems stable. She seems to think my hair has even filled in a little but I don't really notice that. To me it looks the same. She switched my appointments to once a year instead of every six months. All in all I was pretty satisfied with the visit and hope this unpredictable disease remains inactive. 

ammie, that is great news- stable & inactive is always good!  

I saw my own dermatologist several weeks ago and she switched my appointments to once a year also, combining the hair check with the yearly skin check.  I think she doesn't know what else to do with me since I refuse to take the medications she wants to prescribe :-/

Thank you, Minter. I totally understand not wanting to take medications. I have to have blood drawn every two months for the medication I am on. I don't know how much longer I will continue with my meds. 

@Minter I had a conversation with my family dr on Wed. about the no meds/meds conflict. She supports my decision because of the side effects that are complicated by my kidney problems. She is happy to know that the reason for the hair loss has finally been found. She admitted hair loss and what causes and cures it can be a frustrating mystery when it goes beyond low iron or thyroid problems. Anyway, I’ve accepted my fate. I spend my days hoping my hair loss remains stable and I look at wigs now and again. 

I've learned yesterday that my sunblocker contains titanium dioxide (TiO2), I used it the last summer abbundantly. Titanium dioxide is been frequently linked to FFA so if you use sunblockers be sure to check the ingredients with the manufacturer first.

@illustr8r - Yes, I too have accepted my fate! I am done with obsessing over my hair and spending money and time over this stupid FFA.  Apparently I am/was one of the ones that seemed to get every single side effect from the medications she prescribed in the beginning of my diagnosis when I was pretty much like, I'll take anything and do anything just so my hair won't disappear!  But then after learning about the side effects and learning that even with the medications, FFA hair loss still creeps along- I decided there is no good reason to put my  body through the awful side effects and potential long term side effects.  Since then I tried a hair topper and an intralace system and gave up on both- I now have my hair in a cute spiky cut that hides the receding hair line and I have my powders and potions to also conceal the hair loss and so far it has all been working. When it stops, I have more or less decided that if my hair loss gets to the point that I need a wig I will shave my head and get a wig for those times that I want hair and otherwise, bald is beautiful baby!

Anyway, everyone deals with this disease differently, even every person here on this forum is dealing with this disease differently and there is no right or wrong way to cope with this. I do know that being here has helped me cope with it waaaaaaaay better then if I was on my own and I thank you all for that. 

I agree with you all in not opting for pills, creams and shots from the doc. My derm recommended against “no treatment,” but I feel they are more harmful than good. I fight it with working hard to ingest tons of healthy food, doing what I can to get rid of stress, too. 

I listened an autoimmune podcast about how the skin is the “last priority” organ in the body, meaning your body will work to heal everything else first and skin will be last to heal.

i think our condition is related to the skin and so as we work to heal our bodies it will take TIME for the hair to react.

when I was VERY strict with the diet and put coconut oil on my hairline every night after 3-5 months I had new growth in the bad areas! I was shocked. I’m going through a not great period now but I do think we can help our condition, even if a little, in other ways that are more natural.

I agree with you all in not opting for pills, creams and shots from the doc. My derm recommended against “no treatment,” but I feel they are more harmful than good. I fight it with working hard to ingest tons of healthy food, doing what I can to get rid of stress, too.
I listened an autoimmune podcast about how the skin is the “last priority” organ in the body, meaning your body will work to heal everything else first and skin will be last to heal.
i think our condition is related to the skin and so as we work to heal our bodies it will take TIME for the hair to react.
when I was VERY strict with the diet and put coconut oil on my hairline every night after 3-5 months I had new growth in the bad areas! I was shocked. I’m going through a not great period now but I do think we can help our condition, even if a little, in other ways that are more natural.

Oops. Sorry for the duplicate comment!!

Minter, What powders do you use to disguise hair loss? I've read some use a brow powder? When the wind blows, my hair loss shows the most. 

Mel, I will certainly try the coconut oil with my diet, no gluten, no sugar, no dairy (no fun)  

Haha! I know what you mean... no fun (diet) and a lot of work. Remember lots of vegetables and diverse veg and fruit, including greens 1-2 times per day is the goal (veg 3+ times). I love Mickey Trescott’s recipes. And since Christmas I know use the Instant Pot and got the autoimmune cookbook for Instant Pot which helps speed things up... Some delicious recipes in minutes.... 

On the podcast it said two good really good for skin/hair issues are oysters and pineapples (not together...ick). Buy fresh pineapple (when a center leaf can be easily pulled out and turn upside down infridge to distribute sugars.... the cut up. YUM!!!

i eat canned oysters... Crown Prince brand at Trader Joe’s...

Water intake is supposed to also be important for autoimmune... my friend saw a documentary about that. Did you see national news about 90% of bottled water tested positive for plastic?? Filtered tap is safer. I now get the triple filtered water (35 cents a gallon) at my local food co-op and store it in 1 gallon glass to try to avoid ingesting phlalates 

@pascal,

Is Zinc oxide safe to use? It is a physical sunscreen block. Thanks ! 

My post to the forum is awaiting approval, so I thought I would add it in both place, since there is talk of it. A new article just came out that showed titanium nanoparticles in the hair shaft of a woman with FFA. Just a case study, nothing conclusive, but it points in the direction of sunscreen/cosmetics being a possible cause. I've attached the article PDF. Brunet-Possenti_et_al-2018-Journal_of_the_European_Academy_of_Derma...

@Jess, that is very interesting. I wonder if Zinc oxide would be the same? Argh, I'm trying to find a safe sunscreen as I'm about to go to a tropical destination and I'm a very pale caucasion of irish/danish ancestory. 

@Jess...fascinating article! Thank you! Ugh I thought titanium dioxide was safe but I think there are two types. I will get in touch with my herbalist to get her thoughts. I do believe zinc oxide is safe.

@Lynn555 when are you leaving? If you go to the EWG website you can look at their safe-rated sunscreens. Also, believe it or not, some essential oils provide some sun protection. I need to do some reading about which ones but that might be google-worry. Your fair and I understand you want to be very careful! 

@Pauliegirl. Yes, I thought titanium was safe as well, along with zinc. I was a little confused by the findings. I have also been looking for a safe sunscreen. I think EWG rates titanium oxide as fairly safe, like a 3. Maybe I will stick just zinc based ones?

@Jules Australia and others talking about diet: I just wanted to share about my first visit with a functional med doctor this week. It was really interesting! He is all about the leaky gut and getting it back to a healthy, functional state. While he had not heard of FFA , I have a confirmed autoimmune disease (scleroderma) to definitely have reason to go at this to heal. I think many of us would agree that FFA is autoimmune and it could therefore be healed (halted) as well with the AIP. 

The timing of the appt was interesting because I had waited on this appt for a couple of months, and in the meantime already started myself on the AIP diet (autoimmune protocol) because of what I had learned independently. AIP—No fun a lot of the time, that’s for sure! But it is do-able with learning about recipes and various food options along with a strong mindset that if we fix this gut, we’re in business! So for your hubby, Jules, and for we with autoimmune, I would say we have a viable option here. Doctor has advised a plethora of supplements to help heal the gut. He ordered a slew of labs so we can see where things are at and also measure progress. 

This doctor has been doing this for decades and he said that 20 years ago most people thought they (believers in leaky gut) were crazy talking about the it. It is finally gaining in recognition as a real thing with scholarly articles and research to back it up, not to mention success stories for many individuals. 

What makes sense to me is that we have increases and decreases in inflammation/loss of hair. We try to correlate these ups and downs with medications, but through this blog and in various journals we see that some seem to have a positive result and others don’t with various treatment.  Could it be that what we are really having happen is a decrease in inflammation or hair loss (or the opposite) because of eating /drinking inflammatory food/drunk AND/OR stress? (Cortisol is a big leaky gut offender). Food (no pun intended haha) for thought! 

I don’t know if Helen Mirren has FFA or not-but she got her eyebrows microbladed. Just thought I’d share for those who are deciding whether to do it or not. :)

http://www.dailymail.co.uk/tvshowbiz/article-5564549/Helen-Mirren-7...

@Mel, haha that is ok ;=D I've done triple comments here because I thought it wasn't going through! :-/

@illustr8r, I saw that article- she looks great! Eyebrows make such a difference, never realized how much until I got my own done-

@Anonymous, this is my almost daily- unless I know I am going to stay home and not see a soul all day except the faces on the tv ;-) hair routine:

I use a powder I got in the UK for just in front of my ears it is called Revolution Root Cover Up I haven't been able to find it in the US- yet! But it does seem to last forever and it was cheap, so it is a bummer I can't find it here- sigh.  I am now starting to search around for an alternative (I think I will give the Clairol powder root cover up a try next, I have a coupon)!- I like the Revolution Root cover up because it seems to "stick" to my skin and stay there, I do not want a powder that will slide or drip down the side of my face if I go to the gym or get sweaty or wet or rub it or whatever and this stays where it is supposed to and I get really sweaty, I mean drippy sweaty at the gym so I know it works! So I use that in front of my ears, it has it's own little brush and I apply it in front of my ears and blend it all in, I use the dark brown. I also have my hair cut into longish sideburns on the side so I can pull it forward and disguise the loss even more, then I use a bit of hairspray or Got to Be Glued paste or a mix of both to keep the sides in place.  I use Boost n Blend powder on the top of my head at my part, I sprinkle a bit of powder, blend it in quickly and a spritz of hairspray and it will also stay all day- I don't use it on my sides as it is more expensive so I want to save it for the top of my head! eh, makes sense to me anyway ;-) My hair is strawberry blonde and I get my roots done in a darkish brown, doing that makes my hair Not look so translucent and helps to hide the thinning, you would think it would be the opposite, but it seems to work for me- Anyway, it sounds like my "morning hair routine" takes a lot of time after writing it all down, but really it takes no time at all, seriously, no time and when the wind blows I don't have to worry about my sides anymore, well not as much!  

*** edit to add to my comment, just wandered over to google to take yet another look for my hair powder and they now ship to the USA! Yay! if anyone is interested, it is revolutionbeauty.com  

Minter, Thank you for the info. on your beauty products. I will investigate. I have tried to eliminate any products that have fragrance, use only hypoallergenic, etc. But, this last year I have digressed, because the old products work the best with my hair. So frustrating.  

I am still looking into the study at the U of MN. It is for a topical cream called gabapentin. Doe anyone who has participated in a study have any feedback for this cream? The possible side effects without any benefit are concerning. I guess that's why it's a research study.

@Anonymous, I try to use hypoallergenic also as my skin is happier with no extra "stuff" in the products- but neither of these hair powders irritate me, so I have no problem using them because they do what they are meant to do- hide my hair loss :-)

Bad day today, have resisted medications prior to daughter's wedding, notice I have lost another cm from font of hair line and eyebrows scant and red and swollen...yes life is good and there are a lot of worse conditions ..but has anyone found a product that helps reduce the eyebrow irritation and redness?  Thanks again, 

@pfl Have you tried Cortisone 10 anti itch cream? I use that when I have weird outbreaks caused by god knows what. 

Thanks illustr8r, will give it a go, applied some " hopes relief" yesterday pm seems to have soothed the area a little...to bad no one has found the miracle solution yet, happy Sunday all, it's supposed to get to 31 degrees ceCelsi in Melbourne today, wierd for autumn.

Celcius

Due to a lot of busyness, I haven’t been around. Welcome to everyone new, though it’s a bit of a painful welcome I’m sure. This morning I’m writing because I see there are many inflamed hair follicles right at my forehead, on top on the hairline. I assume that all that’s inflamed there is going to go- a decent sized patch. I admit that I forget to use the cortisone lotion and take my tetracycline, but (at the risk of repeating myself, and all of you...!) it doesn’t seem to change anything. But - I wonder if my first treatment with clobéstasal was better than this one...? That was only once a day. Now I’m on something different twice a day... I hate playing with my meds, but it seems to be our lot. Finagling this and that to see if anything at all makes a freakin difference... 

I think I have been so busy (a good thing) that I kind of got into a denial-mode, and maybe that’s why I haven’t been regular enough with my medicine. If I’m not thinking about it, if I don’t look at it, then maybe it’s just ... gone. Yay! The denial cure! Except those angry red dots don’t bode well. 

Obviously I’m going to pay more attention to taking my medicines. But no finasteride for me, no playing around with my immune system with anything stronger. I’m not risking my health for my hair. 

Bises to you from rainy France. 

Question - do you feel that your minoxydil (spelling) makes a difference? My last Dr. took me off of it, saying it doesn’t. Of course we all know that practically nothing makes a difference, but, in at least our scalp-projective-fantasies of thicker hair, what do you see? Even if you feel it might just be a hallucination... or not. Depending upon where you’re at... 

Haha yes, I am with the denial cure also! That is, as long as my powders and potions keep working!

I always wonder about minoxidil also, my doctor never mentioned it :-/  but will it work to thicken up what I've got and I read about the pre-shedding before it starts working, yikes! Plus, it would be something that I would need to use, for-ever, once started, ugh. So I guess there are pros and cons, just not brave enough to start with it yet I think- 

I started minoxidil to the crown  of my head last year and lo n behold, after about 4 months the handfuls of hair I lost every shampoo decreased, and also I saw some new growth and it was DARK hair, not gray! But..... it was very sparse, not really enough to make a difference. Then I developed a bad case of excema in the exact area so I stopped using it in November.

Everything was stable til the last few weeks when hair loss at shampoo started increasing again. So I don't know if it's just the natural and cruel waxing and waning of this horrible disease or did minoxidil really have anything to do with it??

halfbaked....I recently saw the dreaded follicular red bumps at the front of my hairline and have stepped up the clobetadol use to twice a day and I actually rub it in. The inflammation seems to have lessened a bit.

ughh...you're soooo  right guys, it's all about managing it yourself.