Hello Donna, I am in Ontario. It is definitely a daily chore to fill in my sparse eyebrows and will consider tattooing when I feel ready or perhaps fed up. When you say give up your eyebrows, do you mean when they tattoo, the brow hairs you had will be removed.? I would really love to have the eyeliner but I have a real issue with even an annual eye exam, probably couldn't do it unless I'm drugged & one must keep their eyes open so doesn't sound too promising for me.

Rita, you don't remove your own eyebrow hair to have them tattooed. People have their eyebrows tattooed that don't suffer with hair loss simply as a beauty treatment. You tattoo over your eyebrow hair. I had my eyelashes enhanced a couple of weeks ago - this is a very fine tattoo in the lash line. I am a huge baby and can't stand anyoone going near my eyes - however you look to the corner of the room so you don't see the practioners hand coming towards your eye and they are out of your line of sight.

I can't stress this enough - please ladies if you are losing eyebrow and eyelashes get semi-permenant makeup (tattoos) I know it is pricey but once it is done it is a huge relief and one less thing to stress you out with this condition. There is no need to struggle with our eyebrows/eyelashes when this beauty treatment available. You go back approx 18 months just to get the colour topped up. This is not as much money as the initial treatment. FFA is not a cheap condition and the bottom line is we have to pay out quite a bit of money to normalise our appearances. I am delighted with my eyebrows and eyelashes. It really does wonders for my confidence and self esteem. XXXXX

Judy, Yes!! I have the extreme sweating around my hairline a lot! I also have wondered if this was somehow connected to the FFA. I also get hot flashes, but the worst of it is on my face, and especially my forehead. Hot weather also brings mine on, but other things seem to trigger it too. I am currently away on vacation, but wanted to chime in on this particular issue. I think it IS somehow connected.

sorry, first time leaving a comment. Apparently :( I need computer101 lol to figure it out. Debs :)HI, I know your in the U.K., but how did you locate a semi-permenant makeup artist? I've googled eyebrow tattoo, but my gosh, some of those pics are scarier than what I'm already seeing in the mirror. Thank you

Regarding the sweating, I remember running across something on the internet that referred to FFA as sweating alopecia. It must be a fairly common symptom. So far, I've only had the sweating when I started using topical steroids on my scalp (other than the occasional normal hot flashes associated with menopause).

Carol, I also had some sleep issues with the Plaquenil at first. I had trouble falling asleep, then would wake up every hour. I was also having very strange dreams when I did manage to get some sleep. I stopped drinking any caffeine in the afternoon and started taking my 2nd pill earlier in the day. My sleep pattern is gradually getting better. I've been taking it for almost four weeks, and it has relieved most of my itching, so I'll keep taking it if possible.

Hi Jules. I got my Regaine prescribed on a normal prescription. Do gps have different rules depending on where you live? x

I was told by my GP that I had thinning(atrophy)of the skin where I put Clobetasol Liquid on.She never really said where to put it and I guess I was wasting my time& thinning my skin by putting it on where hair has already disappeared. Who got clear direction on application method? Who just applies where the itchiness occurs & who applies it here & there where the rest of your hair is.?Do you apply sparingly? I haven't found a great way to do so. Thanks.

It's interesting how different the advice can vary from doctor to doctor. Mine said to rub the Clobetesol on the affected areas of the hairline going back only 1/4 inch. I used it for two months, but it made my scalp so tender that I couldn't even stand to go outside on a windy day. I finally gave up & stopped using it a week ago. I can't tell you how much better my scalp feels.

Simone, I am taking plaquenil snd the last time I saw my derm she scheduled a recall visit in 6 months. I think she will do some blood work then. I see my eye doc once a year. I found clobetasol to be very irritating, something I surely don't need.

Am I understanding correctly that it is possible to stop the progession of FFA if you can stop the inflammation? Is that our main goal in controlling this disease to stop inflammation? I am going to the doctor tomorrow for my biopsy results (but feel sure FFA is already the diagnosis from what my dermatologist said). I want to make sure I understand as much as I can before I go in there. Is "inflammation" and "active" the same thing? Thank you for any advise. I am overwhelmed with it all and don't know where to start :( diet, drugs, Rogaine??

Hello Kay, Like Jules, I can only say I wish I had some answers for you! I got the impression from the first (Consultant) dermatologist I saw some years ago about FFA that if the inflammation stopped then the progress of the hairloss would be halted but I've used Clobetasol for several years and though it helps with the irritation and itching it hasn't stopped the hair loss. And some ladies don't seem to have any inflammation and they are still losing hair. I guess the dermatologists simply don't know what will work. What works best for me is a healthy, sensible diet with lots of fruit and vegetables, plenty of sleep, avoiding stress, keeping cheerful and busy ..... and hoping that it 'burns out' - which I have been told can happen. I know it's a lot to deal with. They're bound to come up with a cure eventually, though. Sorry I can't be more help.

Jules, please see the email I have sent you.

Ladies, I am afraid my job as a shift worker is going to prove impossible for me to make the meetings for this focus group. I had wrongly assumed I could discuss the focus group whilst I had my appointment with Dr Harries in Manchester. I have jump through all sorts of hoops to get a day off on a specifc date for medical appointments but I have very little control over where my company puts my days off so I will not be able to respresent us at these meetings.

Sorry Jules to mess you about. xxxx

Kay, the whole inflammation/hair loss thing is confusing. I think that most of us have noticeably inflamed hair follicles (red bumps) along the frontal hairline, but have also lost hair without any noticeable inflammation along the sides. From what I can tell, no one has been able to regrow hair w/ Rogaine in areas of hair loss. Some of us have the itching/tenderness where there isn't any noticeable inflammation or hair loss, like the crown of the head. None of it makes much sense to me.

I have FFA. I have been taking protonix (acid inhibitor)for a very long time. It is the only med I have ever taken for a very long time. I was wondering if this could have had some affect on this problem. Does anyone else take this med. or another form of it?
Thankful for this group

Hi LTown. I have been taking Lanzoprazole, a similar drug to yours, for the past 10 years x

.Hello Liz,I have been taking protonix for 18 years. I stared losing hair 8 years ago. I have tried to come off of it but it is so hard to. I have was off for several months until the end of 2012, then I came down with the shingles in January and decided to go back on it until I got over them. My hair started falling out again. oh my!

When I started to lose my hair I researched Lanzoprazole to see if it might cause hairloss and I read that it can cause thining of the hair in some people. I searched some forums and there were people who were experiancing thinning hair since taking the drug. I'm not sure either way if it's caused my FFA however I have male pattern type thinning too and the medication may well have contributed to this x

I am very interested in your new approach of consulting an immunologist, if such people exist! Any recommendations?

I have been seeing consultant dermotologists for roughly ten years, and quite frankly they haven`t been able to do anything for me.

I have tried more or less everything that other group members have tried, and am currently taking hydroxychloroquine twice a day, and using a steroid cream (synalar) on the front hairline when the hair folllicles get inflamed.

Am so depressed by it all, as my condition is now spoiling lots of things I enjoy, as I have become less able to hide it. Where should I turn for the best help on wigs and hairpieces? Can you get wigs which cover the hairline? I have lost about 2 inches, have got no eyebrows, and my hair looks thin! Advice welcome!!

Hello All,

Today, I finally saw Dr. Paridi Mirmirani, a dermatologist who is treating FFA patients and doing research on FFA. Helpful and informative! I tried to post my diary-style summary here, but it's too long. Instead, I am attaching a pdf file that is a full and lengthy summary of what I tried to post here.

Of course, I think it's an accurate representation of my visit and what we discussed, but I suppose it's possible I may have misinterpreted something. That's my disclaimer.

Best, AC

AC%20Consult%20Appt%20with%20Dr.%20Mirmirani.pdf

AC, a massive thank you from me too... this is fantastic information, it is very reassuring to know that derms both sides of the Atlantic are using the same drugs and that new research is being done. I also realise that what you said that even if I am losing some hair with the plaqeunil I would possibly be losing even more without it.
T have printed your notes out. I will definately get this supplement. XXXXXXX

Hello again!

Pam--I am from Sacramento and Dr. Mirmirani is in Vallejo (90 minutes away from me). You don't have to be a Kaiser member to be in her study, but you do have to go to her office for photos, biopsy, and exams at times. Up side-- you may get the benefit of new treatment experiments? I posted this before, but the study info is at http://www.permanente.net/homepage/kaiser/pages/c12551-48357.html

She and her partner (a molecular biologist) are heading up the study. The molecular biologist is digging into the mitochondrial research, so I wonder if this study could allow one the benefit of laser treatment therapy. Something to ask, for those interested. Since I wasn't actively inflamed as far as she could tell at the time of the visit, Dr. M didn't ask me into the study, but said she will do so if I go active again. Less than a week ago, my scalp was actively inflamed (go figure how that often happens with highly anticipated doctor visits).

I might be able to post a couple of photos of one of my three clip-in pieces to show how I put them together. The key is finding hair that matches your texture, finishing the clip with covering hair so neither the clip or wefts are visible at all, and then cutting the hair to your style so it looks natural (I angle mine). My hair was always fine and thin, so the extra hair on the clips also adds much-desired thickness for me. Honestly, if I'd figured this out even without having FFA, I would have used this idea just to add volume. I will be traveling to So Cal (Dana Point) tomorrow for beach time next week, with my clips in place. :) I return for home on Friday, but would be up for trying to arrange to meet tomorrow evening, or for a morning coffee on Tuesday (before 11 am) or anytime on Friday before I leave the area. With that, I could show them to you in person. I've actually thought about making them and selling them because they are quite useful for FFA sufferers or for those with thinner, fine hair.

To both Pam and Debs--your posts have helped me lots both for info and for the fellowship of what seems to be a similar voyage of discovery through the disease-- and this was one reason I wanted to memorialize and share with all what I got out of the visit.

Faith (in the whole of you are, no matter the hair), Courage (to face whatever comes next with the knowing that you CAN) and Peace (in accepting what is with minimum emotional turmoil) to all--AC

I just want to also note that Dr. Mirmirani and Dr. Harries are both doctors credited in published research articles on the CARF web site, so these doctors really seem involved and interested in cracking the cycle on scarring alopecia. It's extraordinary that we have members here who are getting direct treatment advice from both of these experts. In that sense, access to this forum is a blessing.

AC - thank you so much for all the information from your dermatologist that you've shared. I've lost 2.5 inches of hair and I'm taking Hydroxychloroquine (although I don't much like taking systemic drugs either) in the hope that I might be one of the 50%+ for whom this medication works.
I've started to wear hairpieces and I'd love to see the ones you've designed yourself.
Also the information about eyebrows - I didn't know there was a possibility they might re-grow with the use of Latisse.
Thanks again for all the info. You're a star.

AC-Just wanted to add another really big thank you for sharing all of the information from your doctor. It is unbelievably helpful for those of us who don't have access to doctors who know much about FFA. I would also love to see how you designed your hair clips. I haven't really started taking any medications yet, although I am currently receiving xtrac laser therapy. Have you taken any systemic drugs? Do you think you will start? Thanks again

Hi Ladies,

I will snap some photos of my clip design, but not until next week. I'm heading out for vacation tomorrow.

Simone--Latisse is crazy expensive, but the generic is not so pricey. I've gotten it on Amazon for less than $30/bottle and that lasts over a month. Well worth it to me! The stuff I use is called Careprost and there are active listings there now for $26.90/bottle.

April--I am just starting the Plaquenil in earnest, regular dosing. In the last three months, I took it basically only when I was freaking out and succumbed, but it was certainly not daily. Maybe twice a week at most. I've been taking it twice daily now for just a few days and I am trying to acclimate to it. It makes my tummy a bit grumbly and pained. That is a common side effect, but it subsides for some. I'm going to stick with it and hope that problem goes away.

Thank you SO much for all the information here! It is great to share this awful condition with other people who can really understand what one is going through. I know it is not life threatening, and you have to get it in perspective, but it still feels totally devstating for the sufferer. all the consultants I have seen in the UK have been balding men, and I don`t think they really understand how women are affected by hair loss!

Dr Mirmirani sounds great, but I live in the uk so can`t be part of her study unfortunately.

More information on the hair pieces would be good.
Excuse my ignorance, but is Plaqenil the same as Hydroxochloroquine that we seem to be taking in the UK?

Hello all, Are we being mislead by being told these items work on 50% of us? Where are the people that any of these drugs have worked on? Give us some names, some proof. I appreciate that they are trying to help us & are doing their best. However if anyone has been cured of FFA, then wouldn't they be excited enough to let us know on this forum? So my question remains "Where are those 50% of us whom our derms tell us that one of these approaches has worked for?".

Rita - that's the best post I have seen in months ! Thank you for that !
Pam - yes - it continues to be devastating and The Thing you wake up to face every day - well at least that is the way it seems to me. Plaquenil is hydroxychloroquine.
Paula- your hols must be starting soon - enjoy - and come on over to see me as and when you have time.
Simone - I reckon that Latisse must be in the same 'bracket' as Regaine - you have to use it forever or lose the effect. Eyebrow tattoo is the best thing (thanks Debs !).
I have a birthday tomorrow - starting with a country power walk with my husband and neighbour - great ! X