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

WIGS - www.wigsupport.com - this site is by women with hairloss that wear wigs. They post photos of their wigs and give advise on everything wig related.

Synthetic wigs look natural and are easier to maintain than human hair wigs. A 'cheap' wig would be something less than 100 dollars or 80 british pounds. You can get very cheap wigs that will not be comfortable/last long. A nice synthetic wig by a brand like: JON RENAU, RAQUEL WELCH, REVLON, AMORE, GABOR, HENRY MARGU, ELLEN WILLE will cost between £125 - £250 this will look natural, be comfortable and should last approx 4-6 months. try wigs on in a wig shop and then buy online because it is cheaper. In the UK we get the VAT deducted as we are medical users.

UK website I use is www.buywigs.co.uk

My recommendation is check out synthetic wigs with lacefronts (this makes your hairline look natural) in the brands I have listed above.

You dont need to cut your own hair, just pin it up underneath your wig. Wash wigs in cold water with wig shampoo and wig conditioner. Synthetics regain their style as they dry you don't need to style them.

I wanted to update you all. For those of you who don't know. I was diagnosed with FFA 2 1/2 years ago, but I really have had it for 4 years looking back on when my hair loss started and all the misdiagnoses until it was confirmed FFA. I did really well when I first started treatment for a year or so, then last year I had some stressful things happen in my life and had a relapse with lots of inflammation, itching and hair loss. It has taken a year to put things back to right but I think I did it.

I had my 3 month appt with my derm yesterday and things went well! I have felt really good in the past month or so. Right now I don't have any more burning and itching and my hair loss has stopped. My doctor didn't see any inflammation and told me not to change anything I am doing, and he would see me in 6 months. He was very happy with where I am at right now. So, I wanted to let everyone know exactly what I am doing.

Clobetesol - use it 2x per day for 2 weeks, then decrease to weekends only for 5 weeks, then repeat cycle.

protopic - apply 2x daily during the week when not using clobetesol

rogaine - mens strength. use 2x per day to hairline and eyebrows.

rapidlash - 1x at night to eyebrows

tretinoin (retin A)- apply to hairline and eyebrows

minocycline - (instead of doxycyline) used for 8 months, just tapered off and am no longer taking any antibiotics. will keep it on the back burner in case things go south again.

tumeric - 2x per day.

plaquenil - 2x per day.

My eyebrows have come back a bit, however, my left one is a little more sparse than my right. And both need daily enhancement. I am using a great product that I just found and even my derm could not tell that I had used makeup on them. It is called Smart Brow. It really works to thicken up the hair you have left to make a complete brow. I got it online at Dermstore.com.

As you can see, my daily regimine is tough. But I do it faithfully along with lots of exercise and positive thinking. And hopefully, I will stay this way for a long time. My derm calls me his "model patient" because twice I have been able to halt the hair loss progression (at least for a while). We will see how long this lasts. Especially since we are not certain what causes things to flare up again.

I hope this helps.

Christie

Christie, thanks for all your wonderful information. I'm happy you had a good report from your doctor. I agree that FFA takes a lot of effort, but it sounds like it's paying off for you. Being recently diagnosed with FFA (March 14), it gives me hope. I've already checked out Smart Brow at Dermstore. My eyebrows haven't been affected yet, but they've always been a little sparse. By the way there's a 10% discount & free shopping if you use the promo code BZDISCOUNT.

About wearing wigs - Debs has given excellent information.
I wear what I suppose is a 3/4 wig - it covers my forehead and mixes in with my own hair at the back of my head. Works well for me. I had my own hair highlighted (my hairdresser was very careful) so my hair matches the piece.
I wear an Ellen Wille piece which cost about £135. Bought two at a wig store - not online but I'd try online next time. They are lace front, acrylic and look natural and should last 4 or 5 months after which I believe I could use one for swimming (haven't tried that yet....) The piece attaches to my forehead with sticky tape and has 3 clips at the back which clip into my own hair. Comfortable to wear and I brush my own fringe (bangs) back when I put on the piece.
The wigsupport.com website is very helpful and will give suggestions on wigs and wig care. So should the wig store.

Pam, I'm not totally sure if the rogaine works, but I do see hair regrowth where I had lost some recently. It's not coming in fully, just sparsely, but I figure that it must be helping where I haven't lost hair yet and perhaps it helps where I have cut the inflammation short and the follicle hasn't scarred yet. In terms of eyebrows, I think the rogaine helps as I have been able to regrow them back. By the way, I have very blond eyebrows, so I tint them every three weeks or so, which really helps the illusion of fuller brows.

Finally, rapid lash is for both eyebrows and eyelashes. I haven't used it much on eyelashes, but it seems to be working for my brows.

Also, I can tell when I am doing better with this disease because I grow more hair all over - arms, legs, etc. I find I have to shave my legs way more frequently right now. I dont think I shaved them at all this past winter. Just thought I would add that in.

Christie

I've been using Rogaine for 3 months, and it has has made my eyelashes thicker & longer even though I use it only on my scalp & eyebrows. I also notice that I have to shave my legs more often (which I could have lived without). I'd also lost a lot of the hair on my left arm, which is starting to regrow. I am definitely a fan of Rogaine. I just wish I'd started using it sooner. I'm growing wispy hairs around my face that I thought the FFA had taken.

I use the men's strength Rogaine per my doctor's advice. He also said that the foam version only needs to be applied once a day after the first 6 weeks of use. You need to be prepared for extra shedding from the 2nd through 6th week when you first start using it. This a good sign that the new growth process is taking place. My hair loss probably doubled during that time.

Christie thanks for your treatment regime. Can I ask please do you apply the rogaine before or after the clobetasol ? XXX

Debs, I use the rogaine last after clobetesol or protopic.

Carol, I'm glad you discovered Smart Brow. I can even go swimming with it on and it doesn't come off. And sometimes, if I don't take it off at night, it stays on the next day too.

My derm is very aggressive with this disease. If this was not working for me, he told me he has other drugs that we can try. Although he says the other drugs have a lot more side effects than what I am currently on. I don't know what the other drugs are, but I am really hoping I don't find out. I'm hoping I will continue to have success with what I am currently on.

Has anyone tried spironolactone? It's an oral BP med with anti-androgen properties. I took it for a while and sprouted lots of new hair on top. Stopped taking it due to loe BP but new hair is still there.

Alice, I have been taking Spironolactone for about 6 years to control my oily skin. I don't know if it helps to grow hair, but my doctor thinks it may be the reason my FFA hasn't been as aggressive as some. I'm still taking it along with Plaquenil.

What are the doses for Turmeric, ginger and Vit D that people are taking?

I take 500 mg Turmeric, 100 mg Resveratrol (new med for me...will be dosing up to 500 mg quite soon),500 mg Bromelain, 470 mg Aloe Vera, 400-2000 Vitamin E, 450 mg Licorice root, 550 mg Ginger, 475 mg Neem leaves, 1000 mg Fish Oil.

Also tried Holy Basil, but it made me feel strange, so I dropped it.

Dietary changes:

I did the Joe Cross 5 day reboot juicing fast about 3 weeks ago. bought a juicer and spent 5 days juicing 5 times a day (mostly veggies) since then I have been following Dr Weils anti-inflammatory diet (if you google him you can see his diet pyramid) I have virtually eliminated all processed foods also gluten and diary (I have cheese just a couple of times a week in a salad) I eat healthily anyway so this is not a huge change for me but I feel better for these changes. My skin (on my face) looks good on this, I can't of course say it is stopping the FFA but I feel that it is helping my body by not eating foods that cause inflammation. I would like for the medical communities to look at dietary effects on autoimmunity in more detail. If anyone has a derm that has advice in this area I would love to know.

Wigs - I had a day out in London yesterday with a friend, I wore a wig and I am thankfully now so used to it I did not give it a second thought. I think it has taken 7 months of wearing wigs to fully feel at home in them and they now feel like a normal part of my routine. They say that 'time heals' and this condition definately takes time to be able to find coping strategies and work your way through your emtions. For all you ladies recently diagnosed that are still reeling in shock, it does get better you need to be kind to yourselves and give it time. I am now 18 months on from being diagnosed and am now starting to feel like my old self. Have a good day everyone. XXX

Hi All. I shall look up Dr Weils Debs. I bought the Anti inflammatory diet for dummies book which is a good, interesting read.
This morning I received a letter from Dr Harries. I had written to him saying that I wont be going to see him again at the moment and he wrote back and said that if I want to see him again in the future he would be happy to see me and also that it had been nice to meet me back in March. He is such a lovely man.
Next Friday I am going to buy a wig from Tredco, I'm quite excited! xx

Hi Liz - good luck with your new wig. I had a lot of fun (unexpectedly!) when I went to buy my first hair piece and it's given me a new look and a real morale boost. I hope you enjoy the experience as much as I did.

Hi Ladies-saw my derm. yesterday because the clobetasol solution was causing facial acne and a worsening rash on my scalp. I'm now using Desonate gel which is helping with the inflammation and itching. She injected the top of my forehead and eyebrows again. I was surprised because it had only been two and a half weeks since the last injections. She advised against getting my eyebrows done because she thinks they'll grow back. She said i can use 5% Rogaine once a day. I've started turmeric and resveratrol. Still taking Plaquenil twice a day. I go back to see her August 20. Her name is Dr. Musiek. She is located at the Center for Advanced Medicine Washington University in St. Louis, MO.
I've tried Smart Brow but don't have the hang of it yet. Need makeup 101 along with computer 101!

Liz, good luck with your wig buying, it is a big boost to your confidence to find a solution to stabalising our changing appearance and getting back to recognising oneself when you look in the mirror.

I will get a copy of the anti-inflammatory diet book too. Fab xxx

Debs-It is so confusing when for instance,Dr.Weil restricts certain foods for his anti-inflammatory diet while the Paleo Diet which touts anti-inflammatory approach as well, retricts a whole host of different foods which is claimed to cause inflammation. My naturpath had told me the Paleo approach is best. I am failing miserably as NO Grains are allowed. It seems while I have company staying with me, I cannot follow anything. Has anyone tried & stuck with the Paleo approach.?

Rita, I have compared Dr Weil, Dr Fuhrman and the Joe Cross diet plans (however he used Dr Fuhrman to monitor his juice fasting) and the info on the CARF website... this all pretty much follows the same guidelines. I have not compared the paleo diet with it but basically I think if we eat food as it grows naturally and don't process it that is pretty much all we can do. I wish the medical community would experiment more with diets for all medical condtions so we could get really precise info. I am eating rice and quinoa as my grains and some gluten free oats for breakfast. Good luck Rita, this is very challenging. XXXX

Hi Terry-I have my roots colored by an excellent hairdresser. My doctor says it doesnt hurt the FFA treatment. I use minoxidil 5% and it doesnt affect the color. Hope this helps.

Hi everyone I haven't been on for a while! I stopped it coming through to my emails as there are so many on the website it was flooding my inbox! I hope everyone is well and enjoying this lovely weather, I wish every summer was like this.

Rita, I am currently eating a Paleo type diet. I am kind of doing a combo of Paleo and Specific Carbohydrate diet. I am doing this to try and clear up some other issues I have been having, but also hoping maybe it will have some effect on the FFA? I have been doing it for about a month now. I have been on a gluten free diet for 7 years so going Paleo was not a huge stretch for me, but it is definitely hard. You have to cook EVERYTHING you eat, which I hate, but it can be done. It really is more of a lifestyle than a diet. There is a book and website called Elana's Pantry which is full of great recipes including muffins, breads, and even bagels! I am not a doctor, just someone who is suffering from multiple food intolerances and immune issues, but I really think so many things are related to diet. I'm not sure if the diet is helping the hair loss, but it seems it may have reduced the itching I experience a bit. Also I have lost about 8 lbs. without really trying which is great! I agree that Dr. Weil's diet conflicts with the Paleo diet, yet both are supposed to reduce inflammation. What it really comes down to, I think, is that if you are having any food intolerances or sensitivities you need to eliminate those foods to improve your health. The Paleo diet approach eliminates a lot of the most common food offenders, i.e. grains, dairy, soy, etc., so it seems to be a good place to start for many people. There are some good books that can help you get started. Dr. Loren Cordain is the founder of the diet and has some good books. I can't say I follow any one diet exactly, but just do what works for me. Listen to your body most of all. Good luck!