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!

Thanks April so do you strictly abide by the no grains which I think is the most difficult part of the whole Paleo approach?

Rita, I have been grain free the past month, except for one time I had some rice. I think I feel better without it for now, so I will stay grain free for the time being.

Terry, I color my hair & use a generic version of Rogaine. You should not have Rogaine on your scalp when you color your hair or use it for 24 hours after, probably to avoid irritation. I found this information on the leaflet in the Rogaine box. Skipping a few applications shouldn't affect the results.

Christiekd, I have a question regarding your treatment regimen if you don't mind answering. What is the Retin A for? Is it to keep the hair follicles open by sloughing off dead cells? I have some samples from my previous derm & thought I might try it.

Also, for those that have been using Plaquenil for a while. How long before the tenderness along the hairline goes away? I think mine is from the topical treatments because I never noticed it before my diagnosis. I've been on the Plaquenil for 6 weeks now, 1 x daily for two weeks to give my body time to adjust to it & 2 x daily for 4 weeks.

Annie, Thank you for the information about not using rogaine before or after coloring hair. I need to read all of the directions. I should not give advise without doing so. Sorry Terry. No wonder my hairdresser always washes my hair before she colors it.

Annie, are you using any topicals on your scalp or hairline? My scalp was very sore when I was using clobetasol. It got better when I switched to tea tree oil for the itching. All I use topically now is Elidel along the hairline and on my brows. I've been on Plaquenil for about 6 months, twice daily.

Ladies in the UK - have seen this info on the Alopecia UK website, a lady used the company HEAD4HAIR.COM to get a hair system, she is very pleased with it. They do partial hair systems - this is just a piece to cover the front - exactly what we need with FFA - she recommends getting the 'swiss lace base'. The company are based in Manchester but you can send a template of the area you want covered in the post with a sample of your own hair. Prices seem to start at £129.00 Might be worth looking at for those of you that want supplemental hair but not a full wig. XXX

Christiekd & Alice, thanks for your helpful information. I'll start using the Retin A on my hairline as well as face. Alice, I've stopped using the Clobetesol for a while & still have the tenderness, though not as severe. I also had stinging along my hairline when I had my hair colored on Tuesday. The stinging stopped when my hairdresser rinsed my hair. I'm wondering if it has something to do with the open follicles where I've recently lost hair. I've always had a sensitive scalp.

My new wig! (below) x

Liz, you look great! The wig is perfect for you and looks very natural.

Thank you all for your lovely comments. The whole wig buying experience went a lot better than I thought and in the end turned out to be quite enjoyable. Having a wig on makes me feel a little bit more like my old self on days that were 'good hair days!' I liked it so much that I decided to wear it straight away. xx

Liz you look fabulous! I love your wig. It looks like its your natural hair. Thanks for sharing with us.

Liz, I LOVE your wig. I would never even know it was a wig. You look so lovely! Thank you for sharing!!

Liz - you look great! You must be so pleased with the new hair. You're a very pretty woman and nobody could tell that the hair they see is a wig.
I take the view now that a wig or a hair piece is just another 'beauty aid' and no different to wearing make-up, contact lenses or having a teeth crowned or whitened etc.
Anyway yours is a GREAT success - enjoy it.