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

Congrats PJ! That is great news!

PJ, I'm so excited for you!  It's just the kind of good news we all need to hear.

Did anyone else see the Today Show this morning regarding research in cloning hair follicles?  It's in the experimental stage (with rodents), but it sounds hopeful.  Transplanted cells clump together & cause the skin to grow new hair follicles.  I'm wondering if this might be an option when the ffa is no longer active.   

PJ, this is the best news ever. Congratulations. Break out the best champagne.  My derm said that FFA is irreversible so this is pleasantly surprising.  So what did you eat and drink and what other treatments turned your luck around?

So happy for you PJ!  Very exciting to hear that your hair is coming back!  Please let us know if you took anything besides steroid shots.

I first noticed hair loss around 2008. I was officially diagnosed Aug 2012 with FFA & LPP. My treatment was very conservative.  I was told in the beginning that once hair was gone it would not grow back. Later I was told I was in early stages/mild case of FFA and the hair follicles weren't completely destroyed so hair might grow back. I started out getting the steroid injections, rotating between Head & Shoulders Classic shampoo and DHS Zinc shampoo, using Free & Clear Conditioner and Free & Clear Hairspray. Now I use Ketaconizole shampoo instead of DHS Zinc, otherwise hair regiment is the same.  I think I did a total of 4 rounds of steroid injections. I was on Doxycline for 4 months (Feb-June 2013) I did not change anything with food/drink. I just have been trying to eat healthier in general (which I'm not good at). I color my hair every 5-6 weeks. Almost forgot I did use Clobetasol foam once in awhile - not on a regular basis. I did use it day before and day after hair coloring.   I do not have any eyebrow hair regrowth. I'm using Elidel cream on the eyebrows. I am to continue with what I am doing and go back to Derm Dr in 3-4 months. I'm also seeing her to deal with my rosacea. I do believe the steroid injections are a very important part of the treatment and getting treatment started right away. I know I am lucky because I have a milder case than what it sounds like a lot of you have. I didn't get a chance to ask her if I will have to continue treating my hair/scalp the same way forever or if I can use other hair products.  I think I will be afraid to stray from this treatment for fear my hair will start falling out again. One other thing, I tried to not let FFA consume my life. Sure I had my bad moments, but I really tried to keep it in perspective and carry on in life. Everyone around me was very supportive and did not make a big deal out of it either.  I am afraid though when I go back in 3-4 months the Dr might look at my scalp and decide it's still active. For now, I'm not going to worry about it.

So everyone - just be good to yourself!

April - I do wash my hair everyday alternating the shampoos. I was told from the beginning that it is important to wash your hair everyday to keep follicles clear of any residue, etc.  Once in awhile I will take a week off from these shampoos and use my "normal" shampoo which is Matrix Biolage Delicate Care. My Dr took me off of DHS Zinc because she thought I might be having a reaction (itchiness/redness) to it after using it for a few months. The ketoconizol was just something else to try, not sure if it has made any difference or not. I did develop some dents from the injections. One that took 9-10 months to go away. I did not notice the doxycycline helping with my hairloss or scalp. It did help with my dry eyes and face. She prefers to not have  you take any oral meds if possible.  Hope someone else has this news to share soon!

I agree with PJ's doctor regarding  hair follicles that haven't been severely damaged growing new hair.  I've been able to regrow some hair  with the use of Rogaine.  I've had the best results on the right side side of my face where the ffa didn't start as early.

I'm curious how many women on this site have had steroid injections, and if they think it has helped.  I was diagnosed in March, 2013, have seen 3 doctors, and not one ever mentioned the option of steroid injections.

I forgot to mention with the shampoos, you need to leave them on your head for 3-5 minutes. Also, do not rub the conditioner into your scalp. Just in case it has something to do with my hair, I have been taking a multi vitamin, fish oil, vitamin D, blood pressure meds and potassium. I have been taking these for a long time and none of which were prescribed because of my hairloss.

Hey Everyone, I think I need some advice.  I am worried about these injections.  They seem to have helped others on here, but others not so much.  I had one round of the injections about 2 1/2 months ago.  These shots caused a dent in my forehead which I believe is starting to fill in a bit thankfully. I also believe they caused increased shedding of hair.  I refused another round of shots last time I saw my derm because of this.  He said these shots do not cause hair loss and that I should continue with the shots because it is the only thing that will really help.  I am not going to do oral meds, at least for the time being.  Currently I am receiving UV excimer laser therapy which has reduced the red, inflamed appearance of my scalp greatly.  I believe it may be slowing down but not stopping my hair loss.  I am also following a Paleo diet  and using a shampoo with tea tree and peppermint oil as well taking turmeric. I may try the shampoo that PJ had success with.  I'm not sure what else I can try medically other than the shots, since I am not doing oral meds.  I have an appt. for a second opinion with another doctor and I am seeing a different provider at my derms office on Tuesday.  Not sure if I should continue with the shots or not??

April this is such a hard decision for us all... As you say the steriod injections work for some ladies and not for others... I am having very mixed emotions about whether to try these injections or not.  I am very worried about the dents they can leave... I am using oral meds (plaquenil) and I want to give the doxycycline a go next time I see my derm.  I guess if you are not using oral meds then the shots might be worth continuing with, you could also back them up by using the steriod lotion dermovate and some of the ladies are using regaine (also marketed as rogaine) to see if that helps.  You are certainly well informed and doing everything you can with your diet and supplements to help heal yourself.  XXX

Debs, I guess I will have to decide soon whether to try them or not.  Keep me posted if you decide to try them and if they are working.  Thanks!!

Hello all.  I am seeing Dr Harries  on Thursday morning.  I hope to be cured this time by Friday.  If there are any new questions anyone may have - I will happily ask him.  Looking forward to a little retail therapy afterwards in The Trafford Centre.  On the subject of injections, I didn't have them the last time as Dr Harries felt my skin was still recovering from the previous ones.  I am not planning to have them this trip as I still have a long ridge at my hairline plus a few dents.  Fortunately my fringe still covers them. x

I have just bought the new book by Dr Joel Furhman 'Eat to Live Cookbook', he has just released a revised copy this month.  Very easy to follow recipes that are suitable for those of use trying to use diet to help our FFA.  I am not a good cook and even I can get my head round this. XX

I have been wondering about injections too. I am going to see Dr Harries next week (shame its not the same time as you Celia - we could have done Trafford therapy together!  My husband is not so keen to accompany me to that!!). Seriously, I am very interested in hearing how you get on, and any other tips for me about different treatments that I should discuss with him that I have not already tried.

http://experiencelife.com/article/questionable-food-combos/

I'm a pretty healthy eater but this article was eye opening. It talks about food combining and how some combinations can lead to inflammation. This just touches the surface but I found it helpful. 

April, yes this is part of the anti-inflammatory diet advice given by Dr Andrew Weil and Dr Joel Furhman... please check  out their online websites and they list exactly what you can eat to help auto immune conditions.  I have been following this dietary advice since July, my FFA is still active but slower but my overall health is very good and I have dropped over one dress size - whilst eating more food than usual!  Also check out the Joe Cross website 'reboot with Joe Cross' he is auto immune and has basically cured his skin complaint with diet.

Hi everyone. Am I alone in being on a regime of oral steroids ( prednisolone +Azathioprine) as well as plaquenil and steroid gel. My dermatologist is not the most communicative person and I'm concerned that I am having very unpleasant side effects with questionable results. I have lost a patch about the size of a large egg in ten months and have new inflammation creeping ever onwards. I've also prescribed myself turmeric.

I've not been offered injections .

UK BASED LADIES

CARF (the USA based cicatrical alopecia research foundation) are holding their 1st patient support group meeting Sat 16 November in London at the British Association of Dermatologist HQ.  (FFA is a type of cicatrical alpocia)

I am going to attend.  If anyone else is up for it just email to book your place:

londonsupportgroup@carfintl.org