The wig looks so natural, you look great! Thank you for sharing it with the rest of us, it gives me hope! (Did you go for real hair or synthetic - I can`t tell?).
Carol. I agree totally with you. Women today use all sorts of enhancements for their beauty routines and a wig is just another beauty aid. Plenty of celebrity women; Beyonce, Kelly Rowland, Joan Collins and of course Raquel Welch (who even has her own very good brand of wigs) all wear wigs to help them look stunning. We are in very good company. XXX
I agree that loads of celebrities use wigs as a matter of course, and we need to think of them as another beauty aid - not feel any stigma or shame about wearing one. In fact, when my daughters friends come round to our house to get ready for parties/ balls etc they often have hairpieces with them, all types and sizes, as well as their party dresses! These are girls in their twenties, who don`t care at all about everyone knowing they are adding extra hair for glamour!
Hi Pam. The eyebrows in the photograph are my own. I have the inside bits left, it the outside half thats gone on each one and I colour that in with an eyebrow cil xx
Terry, the Rogaine foam needs to stay on your scalp for at least 4 hours. I use the 5% Rogaine foam mornings only. My doctor said the foam only has to be used once a day after the first 6 weeks. I apply it to wet hair on the days I wash my hair and blow dry it as usual. I can't even tell it's there on the first day, but on day two my hair is a little harder to work with because of the foam buildup at the roots. I wash my hair every other day to keep the buildup to a minimum.
Terry, I also had problems sleeping with the plaquenil for the first couple weeks. I have been taking it for 6 weeks now, and my body has completely adjusted. I'm happy to say that I'm sleeping as well as I was before I started taking it.
Hello all - I have been a bit quiet for a while. Enjoying the proper summer we are having in the UK, loving the grandchildren, seeing friends, creating our new garden, working out in the gym, country walks - what more could I want ? !! XX
Annie, I started out using the Rogaine on my eyebrows and around my face and above my ears going back about 3 inches about 4 months ago. I was so pleased with the new growth after 6 weeks that I started using it all over my head. My hairdresser says she can see more new hairs sprouting every time I go in for my 6 week cut & color.
Annie, are you seeing new growth where there has been hairloss along the front and sides, or only where you haven't lost hair yet? Are you using the men's or women's strength. I haven't taken the Rogaine plunge yet but am considering it. Also, does the new hair have the same texture and color as the rest of your hair? The new hairs I sprouted on top while taking spironolactone is drier, grayer, and frizzier than the rest of my hair.
Regarding Rogaine - I have been told that it is not really effective for alopecia? If it was, surely everyone would be using it? I bought some in desperation, but haven`t used it, as my dermotologist said it was unlikely to be of any use. Any feedback on this?
About Benadryl - I sometimes have trouble sleeping as well, so I will break a pink benadryl pill in half and take a half a dose. This is enough to get me through. I also don't feel so bad taking a sleep aid.
For Rogaine - I think that in combination with our other meds, it is beneficial to use rogaine. When you can calm the inflammation with clobetesol, there are hair follicles that haven't burned out yet and scarred over, and the rogaine helps those hairs to grow back.
May I ask what is the purpose of clobetesol? My derm prescribed clobetesol shampoo for the itching part but I only used it once bc I don't really have any itching. Does it help to calm down the inflammation as well??
Chrisy, I don't get any itching either but my derm has asked me to use it, it is another way of trying to get the inflammation under control. I use disposable plastic gloves when handling Dermovate because it is very powerful and I don't want to get it on any other part of me, or indeed anybody else or my pets. xxx
Alice, the Rogaine has regrown most of the wispy hairs around the sides of my face that I thought the FFA had taken as well as thickening up areas around the bare spots. I've had the best results on the right side of my face where the FFA hasn't been quite as aggressive. It's true that you can't regrow hair in the scarred areas, but, for whatever reason, the hair follicles next to the sides of my face haven't scarred over. I decided to try Rogaine because of all the postings I've read about, the ones using it have had the best results of slowing down the progression of FFA. The derm that diagnosed me said Rogaine wouldn't help, but the one I went to for a 2nd opinion said I should try it. He suggested the 5% solution generic version. I get the foam version at Sam's in the US for about $34 for a 4-month supply. Also, the new hairs that are coming in are the same color as the surrounding hairs and a little finer in texture.
Thank you Annie for your comments on using Rogaine. Also thank you to everyone else for such helpful advice. I am going to Trendco in London tomorrow to have a consultation (thanks again to all your advice and lovely pics of the new wig!) - it has taken me a lot of courage to get to this stage, and all your support has helped tremendously.
Linda, if you want to try it on your eyebrows, just use a q-tip to apply the Rogaine. It doesn't drip at all because the cotton on the q-tip absorbs some of the solution. I find Rogaine has helped my eyebrows the most.
Pam regaine (uk) has really helped the fullness of my hair and I can't praise it enough! Dr Harries, my derm asked me to try it and my fringe area has thickened especially when I compare photographs of course it hasnt help the bald areas but I intend to contine using once daily, hope this helps Sammix
I haven't taken the Rogaine plunge yet but probably will start soon. I had good results on my brows with Elidel cream. It's by Rx only but a small sample tube will lasr for months. Does anyone else have itchy or tender brows?
Hl Mary and welcome - my heart goes out to you - we have all been there and it is horrible and such a shock. Advice from me would be tell nobody initially - then at least if you need a wig then you can get away with it without people who do not understand , being perhaps more sympathetic than you can handle. Find a good dermatologist who has experience. Read as much as you can on this site - there is a lot of info here. I too am in my sixties.... there are ladies on this site who are half my age and I feel so deeply for them. Try to think positive when the dust settles (I am not always very good at doing that !) Have a good cry, mourn a little and then get cracking with a good diet, plenty of exercise, try turmeric capsules from the health food shop - some of us have had reduced inflammation with this - we think - can never be sure what is working really.
Where do you live ? Keep communicating - nobody minds if you 'sound off' on here as we are all in the same boat - it's still afloat and we aim to keep it that way. XXX
Has anyone experienced increased hair loss after they've started injections? These past two months have been a disappointment to say the least. After every shampoo there's a handful of hair in the drain. Just vacuumed my bedroom and bath and i have two handfuls of hair. I see my dermatologist next week and i hope she has some answers. It's about a six hour drive round trip so i just hope i'm getting some benefit. Time for a good cry. I haven't given into it since this started in 2010.
Brenda, I really feel for you! I haven't had injections because no one here reported any improvement from having them. They may not be responsible for the increased hairloss - FFA seems to have spurts every now and then. I too am losing lots at the moment and it does make me so, so sad. Not depressed nor self pitying, just really sad. And a good cry is such a release. It helps to rebuild your strength to keep facing it. Keep talking to us here! XXX
Took the plunge today and got a wig! It is synthetic hair, but looks pretty amazing, and both husband and daughter think it is great! I haven`t worn it in public yet... Next on my agenda is doing something about my non-existent eyebrows. I thought that maybe a semi-permanent makeup would be better than a full tattoo? Any advice?
Pam - not sure where you live, but I can certainly recommend tattooing. I went to Chertsey, Debs having given me the name of a brilliant person who makes the eyebrows look so real. Nobody here knows about The Problem (apart from family) and there have been no comments. Belinda Hayle does the brows in strokes that makes them look totally convincing as eyebrows. I always us a high factor suncream on them daily to help prevent fading - I had them done in December 2012 and my Xmas present to me may be a 'top up'. The injections were on one occasion VERY painful and remained so for hours after. I have veins now running vertically down my forehead as a result and a ridge along the hairline as well as a 'trough' vertical down the middle of my forehead. My fringe covers it all (except on windy days !). Sometimes I cannot believe this has happened to me, going from normal to THIS seems unreal some days. We just must hope that there may be hope of restoration one day. Still cannot bear the thought of a wig. Well done though, Pam - quite a few of us have gone that route and really are making the best of it. Good luck when you 'go public' ! XXX
Celia - thank you for such a quick response! Did you have a permanent tattoo on your brows, or semi-permanent? Do you choose a colour? I will see how I get on with my wig - like you, I haven`t really talked about my hair worries, as have managed to cover it up pretty well, but over the last winter it has gradually got more obvious, and I have become much more self conscious about people noticing it. I have lost the hair around my ears, and it looks very thin and scraggy! I thought about having a topper or hairpiece, but it seems harder to fix when the hairloss is like mine, ie front hairline. Going to the wig shop does make one realise that there are people far worse off though, with life-threatening cancer, and having to go through the terrible treatment that entails.
I just feel so depressed that there is so little really effective treatment for auto immune diseases and alopecia in particular. It does have a profound effect on my enjoyment of life at the moment, and I have got to learn to live with it!
I live in the South West, but can get to the London area easily.
I tell all my friends about my hairloss and that way, in a way, they are going through this with me. People can't be supportive if they don't know what's going on. My friends and family have tried my wig on and it's quite a feature in my home, even when I'm not wearing it! If somebody doesn't understand about hairloss that's 'thier' problem and not ours...Embrace life and wigs! I have better hair with my wig than I ever did with my own hair :o) xx
Pam - I'm delighted that you feel your new hair is a success. Enjoy! I'm sure you look fabulous. Liz - I'm with you about telling people and I've found all my friends and family are supportive and interested in my hair pieces. Of course I still wish I didn't have FFA but I refuse to let it dominate my life. I love my new look and the confidence it's giving me and I'm so happy you are feeling positive and upbeat about your new hair. Good on you!
Hi everyone! Pam, congrats on your new wig: ) I have a question for all of you, have any of you tried Nioxin shampoo/conditioner? My nurse who does my xtrac treatments recommended it to me, he said it helps promote a healthy scalp. I looked it up online and it is a bit expensive and contains a lot of chemicals, sulfates, parabens, etc. Things I generally stay away from. Just wondering if anyone has tried it and if it is worth it. It seems the main ingredient in Nioxin is peppermint oil. Would tea tree oil have the same effect? Thanks!!
my hair dresser gave me the entire system - shampoo, conditioner, and leave in treatment as a gift. I have used it for approximately three weeks and find it to be very drying. My hair used to have a silky texture and it is now quite dry and frizzy, which I think is due in part to the nioxin. As far as tea tree oil, I purchased the Paul Mitchell tea tree shampoo and conditioner and also find it to be drying. I only use the conditioner now (when I have very itchy days) and then recondition with a more mild product. Also, at my last doctor's appt, she told me that I was over using clobetasol and that I may only used it one time a day, Tues. Thurs., Sat. she wanted my scalp to have a "rest".
I want to pass on some advice a doctor gave me when I told her that I felt terrible about myself. She said that I needed to be kind to myself, and to treat myself and to talk to myself as if I were my daughter or friend. I would tell them kind things and be reassuring and that is the dialogue we need to have with ourselves. I am trying, but I confess I am still go into panic mode.
Jules- thanks for the encouraging words. If the injections aren't helping i'm going to ask my dermatologist if i should stop them. Last year i used womens minoxidil for 4 months and I should have kept it up. I tried Nioxin last year and it caused a rash on my face and scalp. I use Free & Clear shampoo and conditioner. Very mild.
I've been using DGJ Organics hair products (from Waitrose) and find them very gentle and not drying. My hairdresser says my hair is in excellent condition (perversely). But I tried a sample of a salt volumising shampoo from Lush and it's lovely! Strange at first because of the salt crystals, but I will certainly buy some.
I've also been using Regaine foam (5%) for 5 weeks now. I'm losing a lot of hair but believe this is a positive thing at this stage in the treatment. It's hard to tell how much actually reaches the scalp. Any tips as to how to apply? I try parting the hair and rubbing it in.
Downside is that it means confronting my thinning hair twice daily when my way of coping has been to ignore it. But the problem is becoming more visible now, sadly! Still hoping the Plaquenil will kick in soon. 5 months and counting!
Oh, also ( sorry to go on..) the steering group meeting planned in early August was cancelled and has yet to be re-arranged.
Dr Harries mentioned at last appt that he now believed that inflammation didn't necessarily mean hairloss would follow. He has patients with inflammation and no hairloss, and vice versa. As he put it, he's stopping following the inflammation.
Have a good weekend everyone! X
Jules, what Dr Harries said makes sense to me. I think a lot of us have had considerable hairloss on the sides with no visible sign of inflammation and many signs of inflammation on top without much hairloss. I've never understood that. I also don't understand the connection between autoimmune and inflammation. Can one have the former without the latter?
Terry, I'm sorry you are so down. I think we all here can relate. I just spent some time with my best friend's sister who has alopecia Universalis since the age of 19, almost 30 years. She has lived with not one speck of body hair. She wears wigs and makeup, but I NEVER knew she had it, I've known her for 20 years. She is one of the most beautiful women I know. She has found a loving relationship, hair loss and all. She helped me to try and put some of this in perspective. You must remember that you are a beautiful person, inside and out! I know this is hard. Try to gain strength knowing it could be so much worse. My sister has Parkinson's disease since the age if 25. She has been through hell with her disease. She gives me strength everyday. Hang in there, and feel free to vent any time:)
Hello all - I know that you don't log on daily but it would be REALLY helpful if we all knew your location - I'm UK. I hope you all don't mind if each time we all log on - we ask folk to go into their profile and say UK US whatever - for me now there are so many of us - it helps to identify and remember in a way - I hope that's OK. Many of us did that a short while ago but there are many new people now. Thanks so much X
Sammiuk hi April I have used Nioxin shampoo and conditioner and noticed the difference. I have found it tk max! much cheaper than online been using it 6 months now.
Carol, wow what a fun thing to do... very plesed that you are carrying on life as normal and doing your extra work. It is so important that we don't allow FFA to rob us of anything more that our hair. Good for you. XXXXX
Hi everyone. I have been diagnosed with FFA and started losing my eyebrows about a year ago. Until recently my scalp itched horribly though I have not started losing scalp hair yet.About six months ago, I started on Plaquenil and that has helped. BUT HERE'S WHAT I WANT TO TELL YOU: three weeks ago I started taking a teaspoon of cod liver oil 2/x per day and the itching has finally gone away. I don't think it's a coincidence. I took the fish oil for arthritis pain but it has had this other welcome effect. My FFA does seem to be arrested though one never knows. Anyway, I thought some of you might want to try it. All the best! Kathleen
Hi all, Wanted you to know that I received my order of SmartBrow that Christiekd recommended and started using it this week. I haven't quite gotten the hang of it, but I love it. It's not like traditional eyebrow pencils that draw a line, but coats every little hair to make your eyebrows look fuller. Christiekd, you're right, it looks very natural. My only issue with it is that the brunette color runs a little dark. I have medium brown hair with golden brown highlights and have always used a light brown eyebrow pencil. SmartBrow is pricey ($29.95), so I called DermStore's customer service line to let them know that I felt like the brunette color was too dark. The customer service rep couldn't have been nicer. She offered to ship me the blonde color at no charge and I don't need to return the one I have. Is good customer service the greatest, or what??? Anyway, ladies, if you're in between colors like me, you may want to order the lighter shade.
Hi. Hope everyone's well. Carol, working as an extra must be exciting. I have the same problem you do with only a little hair hanging over my ears. The left side is worse than the right. Anxious to learn what you decide on, topper or wig. I'm in southern IL and humidity's bad here too (helps the corn grow} but not as bad as where you live. My face and head sweat so much now that i don't think i could stand a wig. Curious about what brand of cod liver oil you're using Kathleen. I'll try anything. I didn't have itching until this spring. Guess that's why my bangs have fallen out so bad. Had third round of injections tuesday. Seems like the itching is worse after getting them. My daughter showed me an article that said BVO in some beverages can cause auto-immune diseases. I'm a Diet Mountain Dew addict. I'm going to try to quit drinking them. I ordered the WonderBrow (believe it's quite similar to SmartBrow) last year but the blonde was too dark. Sorry for writing a book. Have a great day.
Brenda, it's interesting that the BVO in soda might have a link to autoimmune diseases. I got hooked on Diet Coke when I worked at a golf course ten years ago and free soda was one of the perks of the job. I completely gave up soda three years ago because it didn't fit into my healthy lifestyle, so it isn't contributing to the FFA now.
Thanks Annie and Kathleen. BVO (brominated vegetable oil) is only in citrus and orange flavored sodas according to websites I've read. It was in some Gatorade drinks but Pepsico has since removed it.
I used to drink diet coke every day but have stopped now. Could that have contributed to my FFA. Also my head sweats profusely and feels like menopausal sweats.
My head and face sweat profusely too. But i also have hot flashes. I went through menopause about twenty years ago due to surgery. I blame the flashes on lupus. The head and face sweats on menopause. Don't know what the causes are. But definitely uncomfortable and embarrassing.
Liz
Thank you all for your lovely comments. Pam the wig is an Erica Amore wig. Its a monofilament wig xx
Aug 10, 2013
Debs
Beautfil Liz. You have chosen well. XXX
Aug 10, 2013
Pam
The wig looks so natural, you look great! Thank you for sharing it with the rest of us, it gives me hope! (Did you go for real hair or synthetic - I can`t tell?).
Aug 11, 2013
Pam
Liz, I thought your eyebrows looked good too in your photo. Have you got any tips for eyebrows too?
Aug 11, 2013
Debs
Carol. I agree totally with you. Women today use all sorts of enhancements for their beauty routines and a wig is just another beauty aid. Plenty of celebrity women; Beyonce, Kelly Rowland, Joan Collins and of course Raquel Welch (who even has her own very good brand of wigs) all wear wigs to help them look stunning. We are in very good company. XXX
Aug 11, 2013
Pam
I agree that loads of celebrities use wigs as a matter of course, and we need to think of them as another beauty aid - not feel any stigma or shame about wearing one.
In fact, when my daughters friends come round to our house to get ready for parties/ balls etc they often have hairpieces with them, all types and sizes, as well as their party dresses! These are girls in their twenties, who don`t care at all about everyone knowing they are adding extra hair for glamour!
Aug 11, 2013
Liz
Hi Pam. The eyebrows in the photograph are my own. I have the inside bits left, it the outside half thats gone on each one and I colour that in with an eyebrow cil xx
Aug 11, 2013
Annie
Terry, the Rogaine foam needs to stay on your scalp for at least 4 hours. I use the 5% Rogaine foam mornings only. My doctor said the foam only has to be used once a day after the first 6 weeks. I apply it to wet hair on the days I wash my hair and blow dry it as usual. I can't even tell it's there on the first day, but on day two my hair is a little harder to work with because of the foam buildup at the roots. I wash my hair every other day to keep the buildup to a minimum.
Aug 12, 2013
Annie
Terry, I also had problems sleeping with the plaquenil for the first couple weeks. I have been taking it for 6 weeks now, and my body has completely adjusted. I'm happy to say that I'm sleeping as well as I was before I started taking it.
Aug 12, 2013
Celia
Hello all - I have been a bit quiet for a while. Enjoying the proper summer we are having in the UK, loving the grandchildren, seeing friends, creating our new garden, working out in the gym, country walks - what more could I want ? !! XX
Aug 13, 2013
Annie
Annie, I started out using the Rogaine on my eyebrows and around my face and above my ears going back about 3 inches about 4 months ago. I was so pleased with the new growth after 6 weeks that I started using it all over my head. My hairdresser says she can see more new hairs sprouting every time I go in for my 6 week cut & color.
Aug 13, 2013
Alice
Annie, are you seeing new growth where there has been hairloss along the front and sides, or only where you haven't lost hair yet? Are you using the men's or women's strength. I haven't taken the Rogaine plunge yet but am considering it. Also, does the new hair have the same texture and color as the rest of your hair? The new hairs I sprouted on top while taking spironolactone is drier, grayer, and frizzier than the rest of my hair.
Aug 13, 2013
Pam
Regarding Rogaine - I have been told that it is not really effective for alopecia? If it was, surely everyone would be using it? I bought some in desperation, but haven`t used it, as my dermotologist said it was unlikely to be of any use. Any feedback on this?
Aug 14, 2013
christiekd
About Benadryl - I sometimes have trouble sleeping as well, so I will break a pink benadryl pill in half and take a half a dose. This is enough to get me through. I also don't feel so bad taking a sleep aid.
For Rogaine - I think that in combination with our other meds, it is beneficial to use rogaine. When you can calm the inflammation with clobetesol, there are hair follicles that haven't burned out yet and scarred over, and the rogaine helps those hairs to grow back.
Aug 14, 2013
Chrisy, MA USA
Aug 14, 2013
Debs
Chrisy, I don't get any itching either but my derm has asked me to use it, it is another way of trying to get the inflammation under control. I use disposable plastic gloves when handling Dermovate because it is very powerful and I don't want to get it on any other part of me, or indeed anybody else or my pets. xxx
Aug 14, 2013
Annie
Alice, the Rogaine has regrown most of the wispy hairs around the sides of my face that I thought the FFA had taken as well as thickening up areas around the bare spots. I've had the best results on the right side of my face where the FFA hasn't been quite as aggressive. It's true that you can't regrow hair in the scarred areas, but, for whatever reason, the hair follicles next to the sides of my face haven't scarred over. I decided to try Rogaine because of all the postings I've read about, the ones using it have had the best results of slowing down the progression of FFA. The derm that diagnosed me said Rogaine wouldn't help, but the one I went to for a 2nd opinion said I should try it. He suggested the 5% solution generic version. I get the foam version at Sam's in the US for about $34 for a 4-month supply.
Also, the new hairs that are coming in are the same color as the surrounding hairs and a little finer in texture.
Aug 14, 2013
Pam
Thank you Annie for your comments on using Rogaine. Also thank you to everyone else for such helpful advice. I am going to Trendco in London tomorrow to have a consultation (thanks again to all your advice and lovely pics of the new wig!) - it has taken me a lot of courage to get to this stage, and all your support has helped tremendously.
Aug 14, 2013
christiekd
Linda, if you want to try it on your eyebrows, just use a q-tip to apply the Rogaine. It doesn't drip at all because the cotton on the q-tip absorbs some of the solution. I find Rogaine has helped my eyebrows the most.
Aug 14, 2013
sammi
Pam regaine (uk) has really helped the fullness of my hair and I can't praise it enough! Dr Harries, my derm asked me to try it and my fringe area has thickened especially when I compare photographs of course it hasnt help the bald areas but I intend to contine using once daily, hope this helps Sammix
Aug 14, 2013
Annie
Linda, the foam version of Rogaine won't drip when you apply it. It also has less alcohol, which makes it less irritating.
Aug 14, 2013
Chrisy, MA USA
Sorry I have so many questions....
Aug 14, 2013
Alice
I haven't taken the Rogaine plunge yet but probably will start soon. I had good results on my brows with Elidel cream. It's by Rx only but a small sample tube will lasr for months. Does anyone else have itchy or tender brows?
Aug 15, 2013
Celia
Hl Mary and welcome - my heart goes out to you - we have all been there and it is horrible and such a shock.
Advice from me would be tell nobody initially - then at least if you need a wig then you can get away with it without people who do not understand , being perhaps more sympathetic than you can handle. Find a good dermatologist who has experience. Read as much as you can on this site - there is a lot of info here. I too am in my sixties.... there are ladies on this site who are half my age and I feel so deeply for them. Try to think positive when the dust settles (I am not always very good at doing that !) Have a good cry, mourn a little and then get cracking with a good diet, plenty of exercise, try turmeric capsules from the health food shop - some of us have had reduced inflammation with this - we think - can never be sure what is working really.
Where do you live ? Keep communicating - nobody minds if you 'sound off' on here as we are all in the same boat - it's still afloat and we aim to keep it that way. XXX
Aug 15, 2013
Brenda, IL US
Has anyone experienced increased hair loss after they've started injections? These past two months have been a disappointment to say the least. After every shampoo there's a handful of hair in the drain. Just vacuumed my bedroom and bath and i have two handfuls of hair. I see my dermatologist next week and i hope she has some answers. It's about a six hour drive round trip so i just hope i'm getting some benefit. Time for a good cry. I haven't given into it since this started in 2010.
Aug 15, 2013
Jules UK
Aug 15, 2013
Pam
Took the plunge today and got a wig! It is synthetic hair, but looks pretty amazing, and both husband and daughter think it is great! I haven`t worn it in public yet...
Next on my agenda is doing something about my non-existent eyebrows. I thought that maybe a semi-permanent makeup would be better than a full tattoo? Any advice?
Aug 15, 2013
Celia
Pam - not sure where you live, but I can certainly recommend tattooing. I went to Chertsey, Debs having given me the name of a brilliant person who makes the eyebrows look so real. Nobody here knows about The Problem (apart from family) and there have been no comments. Belinda Hayle does the brows in strokes that makes them look totally convincing as eyebrows. I always us a high factor suncream on them daily to help prevent fading - I had them done in December 2012 and my Xmas present to me may be a 'top up'.
The injections were on one occasion VERY painful and remained so for hours after. I have veins now running vertically down my forehead as a result and a ridge along the hairline as well as a 'trough' vertical down the middle of my forehead. My fringe covers it all (except on windy days !). Sometimes I cannot believe this has happened to me, going from normal to THIS seems unreal some days. We just must hope that there may be hope of restoration one day. Still cannot bear the thought of a wig. Well done though, Pam - quite a few of us have gone that route and really are making the best of it. Good luck when you 'go public' ! XXX
Aug 15, 2013
Pam
Celia - thank you for such a quick response! Did you have a permanent tattoo on your brows, or semi-permanent? Do you choose a colour?
I will see how I get on with my wig - like you, I haven`t really talked about my hair worries, as have managed to cover it up pretty well, but over the last winter it has gradually got more obvious, and I have become much more self conscious about people noticing it. I have lost the hair around my ears, and it looks very thin and scraggy! I thought about having a topper or hairpiece, but it seems harder to fix when the hairloss is like mine, ie front hairline. Going to the wig shop does make one realise that there are people far worse off though, with life-threatening cancer, and having to go through the terrible treatment that entails.
I just feel so depressed that there is so little really effective treatment for auto immune diseases and alopecia in particular. It does have a profound effect on my enjoyment of life at the moment, and I have got to learn to live with it!
I live in the South West, but can get to the London area easily.
Aug 15, 2013
Liz
I tell all my friends about my hairloss and that way, in a way, they are going through this with me. People can't be supportive if they don't know what's going on. My friends and family have tried my wig on and it's quite a feature in my home, even when I'm not wearing it!
If somebody doesn't understand about hairloss that's 'thier' problem and not ours...Embrace life and wigs! I have better hair with my wig than I ever did with my own hair :o) xx
Aug 15, 2013
Kath UK
Pam - I'm delighted that you feel your new hair is a success. Enjoy! I'm sure you look fabulous.
Liz - I'm with you about telling people and I've found all my friends and family are supportive and interested in my hair pieces. Of course I still wish I didn't have FFA but I refuse to let it dominate my life. I love my new look and the confidence it's giving me and I'm so happy you are feeling positive and upbeat about your new hair. Good on you!
Aug 15, 2013
April
Hi everyone! Pam, congrats on your new wig: ) I have a question for all of you, have any of you tried Nioxin shampoo/conditioner? My nurse who does my xtrac treatments recommended it to me, he said it helps promote a healthy scalp. I looked it up online and it is a bit expensive and contains a lot of chemicals, sulfates, parabens, etc. Things I generally stay away from. Just wondering if anyone has tried it and if it is worth it. It seems the main ingredient in Nioxin is peppermint oil. Would tea tree oil have the same effect? Thanks!!
Aug 15, 2013
PamW San Diego, CA, USA
I want to pass on some advice a doctor gave me when I told her that I felt terrible about myself. She said that I needed to be kind to myself, and to treat myself and to talk to myself as if I were my daughter or friend. I would tell them kind things and be reassuring and that is the dialogue we need to have with ourselves. I am trying, but I confess I am still go into panic mode.
Aug 15, 2013
Brenda, IL US
Jules- thanks for the encouraging words. If the injections aren't helping i'm going to ask my dermatologist if i should stop them. Last year i used womens minoxidil for 4 months and I should have kept it up. I tried Nioxin last year and it caused a rash on my face and scalp. I use Free & Clear shampoo and conditioner. Very mild.
Aug 15, 2013
Jules UK
I've also been using Regaine foam (5%) for 5 weeks now. I'm losing a lot of hair but believe this is a positive thing at this stage in the treatment. It's hard to tell how much actually reaches the scalp. Any tips as to how to apply? I try parting the hair and rubbing it in.
Downside is that it means confronting my thinning hair twice daily when my way of coping has been to ignore it. But the problem is becoming more visible now, sadly! Still hoping the Plaquenil will kick in soon. 5 months and counting!
Aug 16, 2013
Jules UK
Dr Harries mentioned at last appt that he now believed that inflammation didn't necessarily mean hairloss would follow. He has patients with inflammation and no hairloss, and vice versa. As he put it, he's stopping following the inflammation.
Have a good weekend everyone! X
Aug 16, 2013
Alice
Jules, what Dr Harries said makes sense to me. I think a lot of us have had considerable hairloss on the sides with no visible sign of inflammation and many signs of inflammation on top without much hairloss. I've never understood that. I also don't understand the connection between autoimmune and inflammation. Can one have the former without the latter?
Aug 16, 2013
April
Aug 16, 2013
Celia
Hello all - I know that you don't log on daily but it would be REALLY helpful if we all knew your location - I'm UK. I hope you all don't mind if each time we all log on - we ask folk to go into their profile and say UK US whatever - for me now there are so many of us - it helps to identify and remember in a way - I hope that's OK. Many of us did that a short while ago but there are many new people now. Thanks so much X
Aug 17, 2013
Celia
April - that story is sooooooooo inspiring ! Thank you . X
Aug 17, 2013
sammi
Sammiuk hi April I have used Nioxin shampoo and conditioner and noticed the difference. I have found it tk max! much cheaper than online been using it 6 months now.
Aug 17, 2013
Debs
Carol, wow what a fun thing to do... very plesed that you are carrying on life as normal and doing your extra work. It is so important that we don't allow FFA to rob us of anything more that our hair. Good for you. XXXXX
Aug 22, 2013
Kathleen
Hi everyone. I have been diagnosed with FFA and started losing my eyebrows about a year ago. Until recently my scalp itched horribly though I have not started losing scalp hair yet.About six months ago, I started on Plaquenil and that has helped. BUT HERE'S WHAT I WANT TO TELL YOU: three weeks ago I started taking a teaspoon of cod liver oil 2/x per day and the itching has finally gone away. I don't think it's a coincidence. I took the fish oil for arthritis pain but it has had this other welcome effect. My FFA does seem to be arrested though one never knows. Anyway, I thought some of you might want to try it. All the best! Kathleen
Aug 22, 2013
Annie
Hi all, Wanted you to know that I received my order of SmartBrow that Christiekd recommended and started using it this week. I haven't quite gotten the hang of it, but I love it. It's not like traditional eyebrow pencils that draw a line, but coats every little hair to make your eyebrows look fuller. Christiekd, you're right, it looks very natural. My only issue with it is that the brunette color runs a little dark. I have medium brown hair with golden brown highlights and have always used a light brown eyebrow pencil. SmartBrow is pricey ($29.95), so I called DermStore's customer service line to let them know that I felt like the brunette color was too dark. The customer service rep couldn't have been nicer. She offered to ship me the blonde color at no charge and I don't need to return the one I have. Is good customer service the greatest, or what??? Anyway, ladies, if you're in between colors like me, you may want to order the lighter shade.
Aug 22, 2013
Brenda, IL US
Hi. Hope everyone's well. Carol, working as an extra must be exciting. I have the same problem you do with only a little hair hanging over my ears. The left side is worse than the right. Anxious to learn what you decide on, topper or wig. I'm in southern IL and humidity's bad here too (helps the corn grow} but not as bad as where you live. My face and head sweat so much now that i don't think i could stand a wig. Curious about what brand of cod liver oil you're using Kathleen. I'll try anything. I didn't have itching until this spring. Guess that's why my bangs have fallen out so bad. Had third round of injections tuesday. Seems like the itching is worse after getting them. My daughter showed me an article that said BVO in some beverages can cause auto-immune diseases. I'm a Diet Mountain Dew addict. I'm going to try to quit drinking them. I ordered the WonderBrow (believe it's quite similar to SmartBrow) last year but the blonde was too dark. Sorry for writing a book. Have a great day.
Aug 22, 2013
Annie
Brenda, it's interesting that the BVO in soda might have a link to autoimmune diseases. I got hooked on Diet Coke when I worked at a golf course ten years ago and free soda was one of the perks of the job. I completely gave up soda three years ago because it didn't fit into my healthy lifestyle, so it isn't contributing to the FFA now.
Aug 22, 2013
Kathleen
It's Twinlab Norwegian cod liver oil. I keep it in the fridge and take a teaspoon twice a day with orange juice -- you barely taste it.
Aug 22, 2013
Brenda, IL US
Thanks Annie and Kathleen. BVO (brominated vegetable oil) is only in citrus and orange flavored sodas according to websites I've read. It was in some Gatorade drinks but Pepsico has since removed it.
Aug 22, 2013
silversurfer
I used to drink diet coke every day but have stopped now. Could that have contributed to my FFA. Also my head sweats profusely and feels like menopausal sweats.
Aug 22, 2013
Brenda, IL US
My head and face sweat profusely too. But i also have hot flashes. I went through menopause about twenty years ago due to surgery. I blame the flashes on lupus. The head and face sweats on menopause. Don't know what the causes are. But definitely uncomfortable and embarrassing.
Aug 22, 2013