Celia what time would you like us tomorrow please.....

Good morning, ladies ! Tomorrow I am looking forward to seeing you all any time after 10.30. Polly - my husband will pick you up at the station at 11.17. Safe journey to everybody - am hoping to see Julie, Polly, Debs, Caroline, and Pam - please send me a message if I've missed anyone out, and if those who currently cannot make it, change their minds - you are very welcome ! x

Rebecca you can take plaquenil and doxycycline at the same time, I have a blood test once every 3/4 months with the plaquenil to check liver and kidney function. The last time I saw my derm the FFA was still active and I had been using plaquenil for 3 months, I see him again in November as he wanted to give it more time.... the FFA is still active but it is slower than before... He has said next visit he might also give me doxycycline and has mentioned the steriod injections but I am worried about injections because of the dents they can cause... Your treatment plan is definately the same as we are being given in the UK so it seems that all of our derms are using the same drugs and protocols. Best of luck Rebecca with your new treatment. XXX

Ladies, thank you so much for your encouragment. I've remained positive since my diagnosis almost 7 months ago, but I wasn't prepared for a flare-up two months after starting Plaquenil. I'm hoping my derm will see enough improvement at my appointment next week to keep me on Plaquenil until I hit the 6 month mark. I think I'll also ask him about an antibiotic. He's always felt like I didn't need one because there's no inflammation & very little redness on the surface, but I know others have had good results taking both.

Rebecca Germany, You questioned taking Plaquenil & antibiotics at the same time. christiekd has had good results using both. I think her doctor prescribed something other than Doxycycline, however. You can read her post on page 30. I go back & reread it every time I feel overwhelmed & helpless. It helps me remember that some of us are managing this awful disease.

Jules - not a problem. See you all tomorrow ! x

Does anyone else have problems with static electricity. I've always had slick, straight hair, but now I have hairs flying around and tickling the sides of my face constantly. It drives me absolutely crazy! Also, all the short new hairs I've grown with Rogaine are standing straight up. It's not just the areas affected by ffa that are electric, it's my entire head. If anyone else has this problem, could you please share how you control those annoying flyaway hairs?

Annie i have the same problem with my hair sticking to my face. The texture has changed so much. It's a lot worse when i apply sunscreen or moisturizer. The hairs in my eyebrows that i grew from the steroid injections go every which way. The dents above the brow line are very deep. I have to laugh though, because i don't want to cry.

Brenda, thanks for letting me know I'm not alone. I know what you mean about not knowing whether to laugh or cry. I always thought my hair was my best feature, and now I don't even recognize it. I sometimes think life will be easier if/when the time comes for a wig -- no more bad hair days. I'm trying to be thankful for now that I'm able to hide my hair loss for the most part with the help of a good hairdresser. Still, it would be nice to have a good hair day every now & then. I wonder if the flyaways are caused by the products we're using on our scalp. I use Rogaine and Clobetasol, which are both alcohol-based and very drying. The weird thing is that no amount of conditioner seems to help.

Hi Annie
A lot of the hair on my head has changed. My hairdresser tells me that my hair is growing through in the same way as someone who has had chemotherapy. It's fine and whispy. The bits around the fringe area look like they've got electricity running through them. The rest has gone wavy and is also lighter in colour. The hair on my arms has mostly disappeared and the odd hair that's left is short and grows in a zig-zag fashion. I don't use any products on my scalp xx

The news just gets better & better with this awful disease. Not only are we losing hair, the new growth is getting finer. I tried a thermal protecting product by John Freida for frizzy hair yesterday, which helped. It made my hair glossy & more manageable. The only problem is that my hair is a fine to medium texture, so it weighed it down a bit. Anyway, I actually got TWO compliments on my hair yesterday. I haven't told anyone (not even my grown kids) besides my husband, hairdresser, & eye doctor about my ffa yet because I honestly can't stand the thought of people watching my hairline for changes. Every time I get a compliment (which happens less & less these days), I smile & remind myself that I worry way too much about my hair.

PamW your comment on everything being dry cracked me up! So true! Annie i use Rogaine each night but i rarely use Clobetasol. It seems like it makes my scalp itch. I never had itching until i started all of the treatments. I can hide my hair loss pretty well except when the wind blows. My eyebrows are a different story. Oh well, it could be worse. :)

I never had any itching or pain until I started putting stuff on my scalp. There are days when I consider forgetting treatment, letting the ffa run its' course, and buying a gorgeous wig (or two). My fighting spirit just won't let me give up until I'm out of options. And Brenda, I agree, it could be worse. It's just hard to remember some days.

I usually do not get any itching or pain. I just get bald spots on the hairline. My derm does not understand that I have no indication he says that I am not paying close attention. He even said that he cannot do anything more other than injections which did not prevent the hair loss. I have noticed that the area where the hair fell out is extremely painful if I accidentally touch it with my nails. I have decided on my own to not use any topical steroids since the area is so tender. My thoughts are that the hair will fall out no matter what and I need the scalp to be in the best shape to secure a wig or what ever prosthesis I choose. I am not giving up on treatment but I think that the scalp should be preserved since it needs to be strong.

Any thoughts?
Jen.

I only use an organic shampoo from the brand Neal's Yard. I don't use any conditioner, hair dye or any styling products. I am basically just leaving my scalp alone. I have never had any redness, itching or pain thank goodness. My gut feeling is I need to let my scalp alone.. I am using plaqeunil - with limited success. Am hoping to get my derm to prescribe dyoxycline on next visit.

UK LADIES....

www.surveymonkey.com/s/KQSJTBY

If you type this it will bring up the survey.

This site is set up by Alopcia UK charity. Survey is to find out how much alopecia interfers with everyday life so they can inform the medical profession of the wider impact alopecia has on our lives... it is not just about hair loss... it effects work, hobbies, relationships, self esteem etc..

Thank you Ellen and PJ for your comments re: dermovex - sounds interesting/scary. I will ask Dr Harries about this when I go to see him on October 31st. It seems we humans do all have these mite, but whether they are a factor in FFA or not - who knows ? I am going to wash my hair right now...................there seem to be methods of eradicating the mite on Amazon - I assume one would have to have a test for them prior to any treatment - could it be that they really are an added factor in FFA ?

I do not believe these mites are a factor in FFA. My skin scraping test did not show any mites or anything else unusual. I had to convince the Dr I was seeing at the time to even do the test. I think that something caused our systems to just get out of whack, something that caused us to be more sensitive than the average person. I did see that some people on here had pneumonia as a child. Did anyone else have a major illness as a child? I had pneumonia and scarlet fever. However, I didn't seem to have sensitive skin until I became an adult. Maybe it is still something to do with hormones.

For those of you taking tumeric, how do you decide what brand to buy? What do you look for to know you are getting a good quality? There's so many brands and varying strengths. If I remember right, people were taking 200 mg twice a day.

Hi PJ - I take 1 x 400mg capsule of turmeric daily. It's a SOLGAR brand - free from salt, sugar, gluten etc. It's called Turmeric Root Extract (curcuma longa). I also take a supplement for hair, skin and nails which works wonders for my nails. My hair is very fine in texture, not anything like pre-FFA. I had scarlet fever also as a child. My near fatal pneumococcal pneumonia happened 3 years ago at Xmas. I have said before that I think it messed up my immune system - hence the FFA. My diagnosis was early 2012,but no meds or good dermatologist until late 2012.

Jean - to post a pic - go into Settings which you will find on the top right hand side of the page where you sign in or out. You then upload a photo from whatever is stored on your computer. If you have Skype - put the webcam on and SMILE - get 'caught on camera' ! You can use that image to put on your profile - then just save it and you will see it to the left of the comment box on the FFA page. Hope that makes sense !

Thanks, Celia - finally managed to send through a photo. It's not on the Members grid......maybe I did something wrong!!

Best wishes
Jean

Jean - you look fab as we used to say a hundred years ago. Just keep positive and take it all in your stride. I must say yet again how having eyebrows albeit tattoed ones makes SUCH as difference. Did you mention to Belinda that you have alopecia - Debs and I both got a discount because of that - great perk !! I went in December last year - I always use Factor 50 on them to help prevent fading, but will have a top up as and when. x

We're off on holiday over Christmas and the New Year, so huge thanks for the advice on Factor 50, Celia. Belinda told me that she had now seen four ladies with FFA within a year, having 'treated' none previously. She also gave me discount as I was having the tattoo on 'medical' grounds. I'm now seeing a Chinese practitioner who feels he may be able to improve my autoimmune system with herbal pills and acupuncture............Watch this space!!
Kind regards
Jean

Jean I have used acupuncture a few years ago and it cured me completely of period pain so I am a big fan of chinese traditional medicine. I will be very interested to find out how you get on. If Belinda has done your eyebrows I know you will now look fantastic. XXX

Hi All,
I had my three-month apt with my derm yesterday. I've been on Plaquenil for almost four months now. I was concerned since I had a flareup in September after taking it for two months, afraid that it wasn't helping. The doctor said that the ffa is a little more active than it was three months ago, but I had very little redness & no inflammation at that visit. He thought perhaps the stress from the death of family member might have caused the flare-up, but he said that he feels it would have been much worse it I hadn't been taking the Plaquenil. He said that I should call his office immediately to schedule an appt if I feel like I'm having another flare-up so he could prescribe an oral steroid or antibiotics to lessen the length & severity. I was not aware this was an option, so I thought I might share it with you. He prescribed a different topical steroid since the Clobetesol has been irritating my scalp. I don't remember what it's called, but will let you know what it is as soon as I pick it up at the pharmacy. I asked if I needed an antibiotic as well as the Placquenil, but he doesn't want to overload my system with drugs at this time. I have another three-month prescription for Plaquenil and will go back in January unless I have another flare-up. He said I need to find an outlet for stress to prevent another flare-up. I definitely need to work on that since the most stressful months are coming up with the holiday season.

Hello and welcome to the new ladies here. I just wanted to give an update on my doctor's visits. I saw a new dermatologist a while ago and after getting my old derm's records he prescribed Plaquenil for me to take twice a day and see him in a month. I started it on October 1 and on the 9th I noticed a red rash starting on my legs, thighs, back and stomach. It was itchy but not horrible, just mostly irritating. I have had hives in the past that were much worse, requiring a cortisone shot. After the first day I suspected the new RX since I haven't done anything else different and called my Dr, who advised me to stop taking it and take an anti-histamine - "allegra" & come to my appointment I have scheduled on the 29th. I still have the rash, but it is slowly going away. So now I can't take the plaquenil and I don't know what other options I will have to stop my FFA. I've lost a great deal of hair in the past 2 years and though it seems to have stopped, I still have a lot of hair in the drain when I wash it and struggle with making the hair I have left look good. I still have a very itchy irritated scalp and use a dandruff shampoo Neutrogena t-gel, to try to keep it under control. Has anyone else had a bad reaction to Plaquenil?

KarenGinny,
I'm sorry to hear about your problems with Plaquenil. I know that some ladies are taking the antibiotic, Doxycycline, instead of Plaquenil for the inflammation. Perhaps that would work better for you.

Anne, I swear by yoga classes for reducing stress and anxiety. I've been going twice a week for about 9 years. Its very affordsble with a membership at my local Y. It has also helped me with acceptance and an body image issues in general. The rooms are usually darkened, which is nice if you are worried about your hairline showing.

KarenGinny don't give up on plaquenil. Some generics cause a rash and others don't. When i was first prescribed it in 2010 for lupus i had a full body rash within two weeks. I saw a new doctor in 2011 and he said to try another generic or use the original plaquenil. I haven't had a rash since.

Alice, thanks for the yoga nudge. You must have read my mind. I was just thinking I need to get back to yoga. I have a couple DVDs that are so relaxing I sometimes fall asleep at the end, but I usually choose a fat-burning workout instead. I think slowing down is exactly what I need. My life has been so busy lately that I go until I crash instead of taking time to relax. I don't think I'll get control of this ghastly disease until I start nurturing myself.

Anne,a very wise Chinese physician gave me some good advice years ago, but it took me a long time to understand what he was saying. When I complained that I didn't understand why I wasn't getting any better when I was trying so hard, he responded, "Perhaps you should try softer." It works for me!

Very wise advise, Alice. Thank you. I'm sure that it would be much healthier emotionally if I could just take a break from thinking about ways to manage my ffa.

Welcome to the 101st person to log on to this site, but I'm not sure who you are ! I hope you find the contributions here helpful. Best wishes !

There is a message from Tiffanyaa but I cannot find it.  Does anyone else have this problem?

Jen, Yes, I always have that problem! I wish I knew where to look.

To contact Tiffanyaa - go into the list of members at the top of this page - click on to View All and you will find T on page 3.

There is a comment from T on the top of this page on the discussion initiated by Katy M about Some questions from another newcomer......... hope this helps.

Hi Maddy,

This may be too much to ask but does the ex-wig maker have a site with pictures of her work?  I am interested in seeing her partial pieces.

Regards,

Jen.

Hi Jen,

No, not too much to ask at all :). She just opened a new studio called "Wig and Hair Therapy Studio in Newport Beach, CA. She worked for many years at "Wiggin Out" salon, also in NB. She was the main person that did the wigs and hairpieces there, but it was not her own salon. Anyway, now she has her own. You can look at the Wiggin Out Hairpiece videos on that site...that is her in the videos. Anyway, you can see some of the hair pieces here:http://www.wiggin-out-salon.com/Hairpieces---Hair-Pieces.html. 

I bought two hair pieces from her and they are beautiful, but I haven't done much with them yet. It takes time in the beginning to get used to putting them on and styling them and all that. I haven't taken the time to do it yet. I think I will give her a call and set up a consultation (which comes free with a hairpiece/wig purchase). If I knew how to post a picture on this site, I'd take photos of mine and put them up. I will try to figure that out.

Maddy - at the top of the page on the right hand side you will see your name  - beneath that - click onto settings and upload a photo that you will have stored on your computer.  This will appear when you write a post instead of the blue/blank sihouette you have there now - hope this helps.

I saw my Derm Dr today. She had some unbelievable news for me. She said my FFA has stopped!!. Hard to believe when you feel like your hair is thinner and your scalp still itches. She said that is because regrowth will take some time and my scalp is going back to "normal". I guess she based this on no inflammation or redness, something with the hair follicles and the hair regrowth. I requested copies of my medical records to make sure I understood correctly everything she was saying and to see again that she really said that. She was running late on apts and in a hurry, so didn't get to talk to her long. I do think I got treatment early which must have helped. I did not take a lot of meds that a lot of you on this website are using. I do think the steroid injections were a big help. I didn't get to ask if FFA can return, does anyone here know?  Hopefully she is right and I'm done with this!  So don't give up everyone - there is hope. I'll keep you posted if something changes.

Congratultions PJ. I am delighted for you.

Can you confirm what you did? Was it just steriod injections? Did you use any supplements eg turmeric etc..

Great news for PJ that her FFA has stopped! Lucky you, I am so pleased for you. It`s what all of us would like to hear, so it gives us hope.

Great news PJ !  XX