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

Celia, Happy Birthday have a super day. XXXX

Happy Birthday, Celia! xx

Happy Birthday Celia. Have a lovely day xx

Hello everyone,
AC, thank you for your information. I'm definitely going to go out & get some Reservatrol after work today. One thing that I'm also thinking about is attacking this disease through my digestive system with probiotics. Is anyone taking them? If so, do you think they're helping?

Happy birthday Celia and thank you for the work you do! have a lovely evening Sammix

Happy Birthday Celia! Hope you have a wonderful day!

Chrisy, I'm with you... I also wonder if I'm in the 50% group that Plaquenil help, but it seems to be my only hope at present. Everything I read says that FFA needs to be caught early to stop the hair loss. Does anyone know what stage "caught early" is??? Anyway, I'm trying to stay positive and not let this awful disease take over my life. I saw my doctor last week for my four-week checkup since starting Plaquenil. He likes to do blood work at that point to make sure there are no negative effects from the medication. He was pleased that the redness on my scalp has already cleared up (although it's still tender) and scheduled another appointment in 3 months. I have no idea if it's the medication, vitamin D, turmeric, or even luck, but let's hope it's a step in the right direction. I picked up a bottle of Reservatrol yesterday, so I will add that to my list of pills. I think it was Debs who said that this is an expensive disease. I couldn't agree more...

Carol, you are absolutely right, the first time I went to my GP in December 2011 when I noticed a small amount of hair loss at my temples he said I had alopecia... but didn't know what type!!! I had to go to a trichologist in London to get a diagnosis of FFA. Once I knew what I had thanks to Celia who started this group I have been able to get myself referred to Dr Harries that is an expert in FFA here in the UK. I am sure there are lots of ladies with FFA that are undiagnosed.

I went back to my fantastic lady, Belinda Hayle, yesterday and had the finishing touches to my eyelash enhancement. As I mentioned before, it doesn't hurt at all getting the work done, I went shopping afterwards and bizarrely a monk of all people called out to me in the street that I have beautiful eyes!!! Good grief, how funny but at least I know it has worked. XXXXX

Hello Ladies. I have read all of your posts and i don't feel alone anymore. I was finally diagnosed with FFA last month but I've had it for at least two and a half years. Docs told me it was a symptom of my lupus until this May when my lupus dr referred me to a dermatologist. The derm. i saw in June of 2012 thought i had FFA and then decided it was lupus and told me to use rogaine. Now i'm using clobetasol lotion and getting injections in scalp and eyebrows. My scalp has receded an inch and a half and my eyebrows are almost gone. I thought i had accepted what's happening but i dream about it so I'm not there yet. Totally computer illiterate so don't know how to put a picture on. I'm from southern IL and i go to St Louis, MO to dr. I'm going to try the tumeric. I take biotin and Viviscal. I've been on plaquenil for two years. So glad i found this site. Thanks to all for the info.

Brenda, welcome... You will find tons of support as well as information on this site.

Thank you Annie. I've learned a lot from reading all the posts. And its so good to be able to share thought and feelings.

Hi Carol. We never know what lifes going to throw at us. My parents died a month and a half apart in 1992 and then i got fogged with farm chemicals nine days later. Think thats what brought on the lupus. Im sorry youve had to deal with so much. Try the plaquenil again. I think its helped me. I know its helped my lupus.

Brenda, I'm glad to hear that you think Plaquenil has helped. We all take it with the understanding that we have a 50/50 chance that it will slow down the hair loss. I've made up my mind to expect that it will work for me. Maybe there's something to be said for the placebo effect.

Brenda, hello and welcome to the group. I am sorry you have lupus to deal with as well as FFA. We are all in this together and having each other in this group that Celia started only a year ago is a life saver for me. Any questions you have please just post on here and we will all try to pitch in and help. XXXX

Hi Debs. Thanks for the welcome. I see my dermatologist Tuesday because the Clobetasol seems to be causing more inflammation and itching than what i started with. Has anyone had this problem? I have some Desonate gel for eczema that i put on my scalp that is helping now.

Brenda, I used 5% Clobetasol lotion for a little over two months. My doctor said that my scalp might be tender for a few days until I got used to it, but the itching & burning never stopped. The worst part was that I was never able to forget about FFA with my itchy, sore scalp. (My husband remarked that I reminded him of a monkey always scratching my head.) My doctor seemed surprised, but said I could stop using it for a few weeks, then try using it every other day. He also said I might be using too much. It only takes a tiny bit.

I have not worn a hairpiece or wig yet, but feel that I am now at the stage that I need to, as my hairline has receded so much that I am feeling extremely aware of it all the time, and it is adversely affecting my life (especially on windy days!). An old friend who hadn`t seen me for a couple of years asked me very concernedly what was the matter with my hair and whether I was having cancer treatment...so that is evidence that other people are noticing it!

I would really appreciate some feedback from people who are now using hair systems, wigs, or hair pieces.

I have looked at intralace systems online (Lucinda Ellery) which sound amazing on their website (of course!), but then I have also seen that some users have commented on the fact that they can destroy your own hair by the way they are attached, apart from being incredibly expensive.

Are synthetic wigs easier to maintain as real hair, and just as good?

People talk about "Cheap" wigs, and quality wigs - how does one tell the difference?

Are top pieces, 3/4 wigs, clip on hair pieces easy to use? My hair is OK at the back, but vanishing at the sides and front hairline.

I have seen places advertising free consultations etc, but I don`t want to get taken in, and go along the wrong path. Help!
I am feeling rather lost trying to investigate all the options, and would so like some advice here!

I may have been using too much Clobetasol. Will try it again. Depression and anxiety is something i've been dealing with for two years. My lupus doctor put me on the generic for Effexor. Then added 150 mg of Bupropion. Helps a lot for the depression but not the anxiety. My company made me go on long term disability exactly two years ago today. I patrolled power lines on an ATV and read electric and gas meters. I could only do half of the work at the end. The lupus kicked my butt. I went from walking all day almost every day to sitting on the couch crying and feeling sorry for myself. Gained over 20 pounds not being active and taking prednisone. Meds helped me get off the couch but hard to get rid of the weight. Im taking omeprazole for GERD so that might be why im not having stomach issues. Sorry im writing so much about myself. My boyfriend's never let me talk about it. He believes if you talk about problems it makes you worse. Will go to NAAFs website. Thanks

Thanks so much for the kind words. So happy i found all of you!! I already feel so much better!! Much thanks to Celia!! I found a good wide brimmed hat in the garden dept at WalMart thats made of recycled paper and polyester that has a drawcord under the chin. Lightweight and not as hot as others ive worn.

Brenda, I also wanted to say that don't worry about talking about yourself too much, that's the best way to share your story and let us all understand what you're going through - what we're all going through. Sometimes writing it all out is a good way to deal with it. My husband is very understanding but still he doesn't know what it's like to be a woman with hair loss. Other people act like it's "only hair" and not even noticeable, but to us it is. We are the ones who have to deal with it every day and try to make ourselves presentable to the outside world so we don't get stared at or presumed to have a deadly illness. I have been wearing stretchy cotton headbands to hide my bald areas at the temples and forehead. I wear them under my hair and bring my bangs down over them and it helps when I go outside and the wind wants to blow my hair all over. I'm not sure if it looks right or not but it's the best I can do. Or I have a cotton baseball style cap I wear to my son's baseball games or out walking. I've never really been a hat person, but now I have to be. Indoors I just wear my long bangs down to cover my forehead as well as I can but they are thin, and my head is probably still visable. I'm not ready for a wig at this point yet, since the back of my hair is still fairly thick. What does everyone else do to hide their hair loss??

I'm not quite ready for a wig either. I think i"ll try the headbands. I want to get brows tattooed. Can you do that if you're getting injections?

Thanks for thinking of me Carol. It had to have helped because i've been happy all day! The weather is beautiful too. I looked at some wig sites that were mentioned on here. Think i will find a shop when i'm in St Louis tuesday to get some advice. This site is absolutely wonderful. Almost back to my old self (minus lots of hair). Haha