Hi Heidi, I am so pleased for you that the meds are having an effect and your pain has stopped. X

Thanks for the clarification Pam re my confusion with Liz and my medication!I was getting worried that I had been given the wrong info.I am seeing my dermotologist in Feb, I'm not expecting much but I am going to ask how long I am to take this drug, the worry is if I do stop taking it, is my hair loss going to speed up again ( should i have a spare lot of medication just in case?)
Pam I'm so pleased you are pain free, thankfully I don't suffer that way my head is sensitive but not painfull. Can you remind me why Actos is ment to be the new wonder drug as I would like to ask my dermotologist about it, I can remember it has some harsh side effects but its worth a discussion with her!
Liz I'm sorry you have had such a negative response but don't let one person cloud your judgement, we have all had some kind of negative feedback, but just keep going back until you get what you want, there are always second opinions. But to be quite honest I have found more infomation on this web page than any of the 3 doctors I have seen! Thank goodness for all of you!x

Hi, sorry I am so late in getting back. Pam, it was a good and informative appointment. My dermatologist, Dr. Pelle, is very familiar with our disease and also very interested in the medical part, blood reports, etc. She said most of the patients she has seen are between 40-60 and I asked WHY ME? at 72? She thinks I was healthy and it was delayed. I was so surprised at that )the healthy part - I don't especially see it that way) and it felt good! I have never had the pain you talk about - glad you are without now. However, I have bad chronic pain from arthritis and have often missed other pain so maybe I just don't know.
I had good news. It seems the hair loss is slowing or stopping, there is no reddness so I am to continue same treatment for 2 more months - Plaquenil 2/200mg/day and Clobestol.
What you all might be interested in......Dr Pelle is interested in our website and would like to visit it. I was so busy and not able to be on the computer this week that I haven't sent it to her yet. I will on Monday. This is good news, yes?
Could one of you techies please tell me what website I should send to her? Hugs to all, Judy from San Diego

She also said sometimes it is possible for hair to return in some degree. Sorry I can't be more specific because I got a quite confused about that. I was so surprised as I thought it was impossible for hair to grow back with FAA.
One thing very intesting at the appointment was: first appointment she took photos of the hairline and it looked AWFUL!!!! Lots of red bumps and inflamation. So different compared to this time - 2 months later

Thanks Pam. I always go to the site through email and wasn't sure of the website. I am happy about the interest she showed.
Yours (and others symptoms certainly seems to be mysterious the way they change. How long are you supposed to give Actos a trial? Don't give up if you still have some time left - there are always "ups and downs" for most things. But still, I wonder why yours can change so much. How often are you using the Clobosel?

I have been using it every 2-3 days on all the "bare" areas but that is a question I need to ask her by email. Forgot at appointment. Originally she said to use every day or every other day - that was when it was so red.
Pam, have you had your blood checked? She sent me for 2 tests that my regular doctor hasn't done. Also she was questioning that my protein level was low and iron near low mark. Both are important to be near to normal.

PamW - I thought I would comment on the red scalp issues, My scalp has times when it's relatively normal but right now in winter it is really dry and flaky and a little itchy - like dandruff. The front bare parts of my scalp are white and not irritated - only irritation is on the part with hair. When my hair loss first started 1 1/2 years ago it was more irritated and very itchy - that's when I first saw my dermatologist and was prescribed the Clobetasol. I haven't used that in a while and usually use T-gel shampoo to control the itchiness and flaking. I'm not on any other meds since my doc didn't recommend anything as most of my hair loss was already done. If it gets worse I will go back to the clobetasol.

Hi Pam, I don't have any white flakes. My scalp doesn't feel any different than before I had FFA. I have the dermovate lotion, I am not using it simply because I have not got any reddness or visible iritation. My hair however is continuing to receed.

And mine had the white flakes before I was diagnosed. I was putting baby oil on it. My redness was along the forehead and temple at the hairline, tiny red bumps. Now it is white. From the sound of these posts it seems the clobesol helps or eliminates the irritation.

Hi, Robyn. Welcome to our merry little club. I am pretty sure that most of us have been recently diagnosed within the last year or two so we really don't have long term experience with Plaquenil. Coincidentally, I had an appointment with my regular dermatologist today. I see two doctors - one regularly and one is a "specialist" at UCSD (University of California San Diego). My regular doctor knows just as much as the specialist -- but she has never treated anyone with this condition. I asked her tonight about how long you can be take Plaquenil and she said it is safe to take for years. Many patients with Lupus take Plaquenil and she said as long as your liver panels are checked periodically, you can stay on the drug for a while. This is good, because our disease is a long term affair. She said I will probably deal with it for at least the next 10 years. I have to get used to the idea that I have a chronic illness. She thinks my hair loss is progressing slowly. She wants me to stay on Actos for a few more months and continue with Plaquenil and Clobetasol for the itching and burning.

Anyway, don't be shy. Just chime in -- we have all ranted and raved about how we feel. Within the last two days I have had some pretty awful news about the health of friends much younger than myself and with young children. I feel ashamed of myself sometimes when I think about how I obsess over my hair.

Anyway, Debs - I wanted to tell you that the reason why you look so beautiful in your wigs is because you are beautiful.

Oops - Wasn't sure where to respond and looks like I hit add comment too quick! Thanks so much Pam for responding so quickly. It looks like this condition is a 'waiting game' and I will have to be patient. I like to be prepared for what is to come (like a few others it seems), so I will continue to do research and try to keep up to date. Thankfully I haven't had the 'itching & burning' and didn't need to use the Clobetasol (which my specialist had prescribed initially). Of course I don't presume to think that may not happen!
I have also had reality checks with family who have faced far worse situations - so I try to keep things in perspective which I have to say does help cope at times.
Many thanks once again. I look forward to keeping in touch with the group.

Pam, your compliment is very much appreciated. Your doctor clearly is very informed about the long term use of Plaquenil. It is a huge relief to know that we can use if long term if needs be. I feel much more positive this year about my FFA and am not obsessing on it as I have in the past 12 months since first noticing my hair loss.

Hello to you Robyn - lovely to have your input.

Good mornign Celia. I wonder who the 'good dermatologist' is in Brighton. I imagine it's the one that I saw who isnt thaat good unless you want to pay him privatly. Strange really becuse now Im waiting for my appointment with Dr Harries!
I was prescribed plaqunil but I'm not risking it. I'd rather be bald that have my eyesight get worse than it is already. I've been told that one effect of the plaqunil is that you lose the colour vision in your eye. As an artist with poor eyesight I cant afford to risk it
It's a shame that there is no definative answer to our hairloss. I guess we can just try to find out as much as possible so that eventually they find a way of helping. It runs in my family so hopefully my children and grandchildren will be able to treat it because of us and our input.
Have a good day Celia and my best wishes that everything goes well for your sister in law.
xx

I have exactly the same thing Celia, just in front of the hairline. Its a dip in the central area of my hairline (where it was originally), seevral inches long at least and it was definatly not there before I had this problem.xx

It reminds a bit of a burn scar because the skin is thinner, indented and has no colour at all x

I can't detect anything like a ridge yet, but my hairloss is mainly at the sides so far. I'll keep a look out and see what develops over time. This might be the sort of info that should be interesting for Dr Harries - he said he'd not heard of red spots between the eyebrows as has also been mentioned.

Hi Celia, thanks for the update on your visit to Dr Harries. I have not noticed this dent on my scalp, now you have mentioned it I will keep an eye out for it. I am so sorry to hear about your sister-in-laws health problems, I do hope she gets a clean bill of health when she gets her results. Knowing what is happening at your appointments means I have realist expectations of my own appointment next month, it is a huge help. XX

I'm not sure how many of us in the group live in the uk but I was thinking that it would be nice to meet up when the weather gets a bit nicer. Maybe we could arrange something if anyone else is interested?
x

Hi Rebecca. Welcome to the group. You will find lots of friendly support and information here.I am 41 and was diagnosed last September. It came as quite a shock to me and I worry becuse I dont know how bad it's going to get. I believe that mine started after a very stressful period in my life. I am currently waiting to see a dermatologist in Salford which is a long way from my home but several of the ladies in this group have seen him and he seems supportive even though his doesnt have all the answers that we so wish for, like why,? And how? and how can we stop it from getting worse! I have so far lost about 1.5 inches from my hairline, all of one temple and half an eyebrow! xx

Hi Everyone! Just wanted to give a report from my Dr.appointment yesterday. She said I had turned a corner on the disease - a good corner. Yea!! At least for now. Apparently things look better. I have new growth, less redness and inflammation. Even some fuzz where I used to have eyebrows! Of course things can always change with this disease. But for now it's good news. I am not as advanced in the disease as it sounds like a lot of you are, even though I've been dealing with it a few years. My treatment has been very conservative. I am not on any oral meds. I've only changed my hair products, getting steroid injections, and have used Clobetasol once. She was going to put me on Doxycline to help with inflammation, but this drug is on backorder everywhere. She does want me to use Clobetasol 3 times weekly just to keep inflammation down.I talked to her about Plaquenil and Actos. She said Plaquenil was not necessary now for me, but we did the bloodwk and I will get an eye exam done in case things change. Then she will put me on that. Felt it would be the best first oral med to try if needed. Actos she said had to many side effects that were not worth dealing with at this point in my stage of disease. I did not have any injections in my scalp done yesterday, just in my eyebrows. The steroid injections last time did give me a dent or ridge as some people say. It is a very common side effect that takes a long time to go away. It is from the steroid getting injected to deep and goes into the fat layer. Do not put any other steroid on those areas. I am also going to have a Patch Test done which is an allergen test specifically to see what your skin reacts too.

I told her about this website and gave her the name and address of Dr Harries. The study I mentioned previously on a comment I left about the Univ of Minnesota, is actually being headed up by Drake University. Something like 10-12 other university/clinics from all over United States will be involved. Hopefully this year sometime.

Rebecca - your family,children and friends will love you no matter what you look like!! Our children, I think, have been taught and have learned to be more tolerant of others than older generations. They will remember your sadness growing up more than some hairloss. I encourage you to find a support system to surround yourself with. Get out and enjoy life, you can't dwell on this disease! When I found out I had FFA I was actually relieved. I was so happy I was not dying of some strange illness!! Hairloss is nothing compared to death. There is no cure for that. I do get bummed out when I think someday I will have to wear wigs or hats all the time. (I hate hats!) You just have to keep it in perspective and realize there are worse diseases to have in life. Sorry this got so long.

To Rebecca, Glad you found our group, although sorry you are here because of this terrible condition. I started having my hair problems when I was 45, diagnosed with FFA last March at 46; so I was one of the younger ones. I have two younger sons, ages 13 and 10, so I know what it's like to try to be active with them and go to their school activities and be so self-conscious and wonder if anyone notices my awful hair. I just do my best to style my hair with long bangs and wear a hat outside if it's windy. But you must know that your children will love you no matter what you look like. It make take some time, but I think we all eventually have to make peace with our condition and try to continue on, and realize that we are lucky it's not a life-threatening thing. I went through some very depressing moments with this, but realized my family needs me and sitting around crying won't help it get better. PJ - Is that Drake University in Des Moines doing the study? I live in Iowa and would be very interested in participating in something like that, and in seeing other doctors for their opinion. If you have any more info about it, I would love to hear about it.

KarenGinny - I assume that is the Drake Univ, but didn't ask. You should contact them and see if they have a Dermatology dept and see if they are accociated with a clinic that sees patients with FFA. I will let you know when I hear more.

Hi ladies,
Just got onto the site and have read comments in response to Rebecca. Hi Rebecca, I'm new to the site also. I do hope the support from others will help how you are feeling. It's good to know others are experiencing similar feelings (although sad we all have this awful condition). Reading the comments about wigs has given me some confidence to check that out when I feel I need to. I guess I still keep hoping it won't get to that stage, but I have to be prepared I think. I have been on Plaquenil for almost 2 years and it's possible that might have slowed my condition, although it sounds like that might be hard to tell as everyone seems to have varying degrees of FFA. My specialist feels part of my condition is FFA and part of it is post menopausal hair loss (double whammy!)she is keeping me on the Plaquenil as I have had no side effects and she does feel it is helping. Most of my hair loss is top hairline but I have also thinned on the sides over the past 6 months. I have curly hair and so far my hair style is hiding most of the problem but not sure how I'll go if it progresses but more. KarenGinny mentioned a hat but I have to say I look terrible in a hat so hope I don't have to resort to one!

I couldn't go without mentioning that I have just become a grandmother! Tuesday 21st Jan our granddaughter Chelsea Elizabeth was born - we are so excited and looking forward to getting to know her. My daughter-inlaw and Chelsea are doing well and my son is learning all about nappies!
Enjoy your children Rebecca - they grow up all too fast. I can't believe my little boy is now a Dad! I agree with others, they will love you no matter what happens to your hair!

Hi, everyone! PJ, I am so glad things are going well for you. I am curious about what "hair products" you are using? Also, were you diagnosed with a scalp biopsy? The reason I asked is because I have been told that regrowth is not possible, so I am curious about your regrowth. Also, I have been taking Plaquenil and Actos and STILL have redness on my scalp. Do you?

Robyn, congrats on becoming a grandmother. I can't wait! My kids aren't married yet . . . but I am starting to get the desire.

Rebecca, almost all of us have been diagnosed within the last year, and some have just started taking meds. I have been taking the generic for Plaquenil for 6 months now and I think it is slowing things down - but who knows? I don't know what I would be like without the meds! Some medication takes months to build up enough in our body to begin working.

There is a page on Facebook called LPP Let's Put Out the Fire and so many of the members claim they have had reduced symptoms and success with various diets - Gluten Free and Paleo. I always felt like food has something to do with this because when I wake up in the morning my scalp feels normal and as the day goes on, I become itchier or more red. Recently, someone suggested controlling histamines in your body -- made me think . . .

Anyway, Rebecca you are not alone. All of us have had terrible days. The thing is that you have to put one foot in front of the other and keep going. Your kids don't care about your hair one bit -- they care about your heart. Even if you have to force yourself -- stay busy. Look into your kid's eyes and not at mirrors. When I am busy, I don't think about FFA. I think anti-depressants make sense if they make you feel better. Good luck.

I was diagnosed with FFA with a scalp biopsy. The redness on my scalp varies, not sure why. My hair products: Shampoo - rotate every other day between Head & Shoulders (zinc) and DHS Zinc Shampoo; Conditioner - Free and Clear brand; Hairspray - Free and Clear brand. This regiment was prescribed by the Dermatologist I see at my first appointment. I was told previously there was no regrowth too. I didn't think to ask her about it, I was too excited to hear things were better I guess. I'll make a note to ask that at my next appointment in a few weeks. I wonder if the histamines/allergens has anything to do with things. I do have alot of allergies. Something to keep in mind when I take allergy meds or get my allergy shots. I'll have to see if I notice a difference.

Congrats Robyn! Enjoy being a grandmother.

PamW - I forgot to mention on my shampoo, I leave it on my hair for 3-5 min then rinse it off.
Rebecca - I was told the dents go away or they smooth out. The timeframe varies person to person, but usually takes months to a year. I'm going to ask my Dr again about that.

Hello ladies! I joined this group in Nov but haven't contributed to the conversation yet. I was overwhelmed as I read through the threads about how similar my story was to so many. I'm 45 and was diagnosed Feb 2012 when I started working with Dr. Hordinsky at the U of M. It was my eyebrows disappearing that got my attention, and then the hairline slowly followed; all of this really starting 4 or 5 years ago. I have an 8 and 5-year old so I've been pretty tired and sleep deprived for most of this time so who knows when it really started. In 2009 I had been suffering from lots of eczema and psoriasis, and multiple illnesses in 2010--everything my kids brought home--and some joint stiffness so I was tested for lyme, lupus, celiac, allergies, thyroid, everything with the only abnormality showing up being low ferritin. I was relieved to not have something life threatening. I worked with one dermatologist who biopsied my scalp and diagnosed LLP. I then found Dr Hordinsky through CARF and she diagnosed me with FFA. The unknown aspect of FFA is what is scary to me, just not knowing how bad it will get. I once said outloud,"I wish my eyebrows would come back so I wouldn't look so weird" to which my daughter said "mommy you just look like you." :)

My current treatment involves steroid injections every 5-6 weeks, 5% rogaine foam at night, desonide on the eyebrows during the day. I also just started using the generic Retin-A on my forehead to build up the collagen to mask some of the blue veins showing through my skin (extra bonus using it on other parts of my face! bye bye wrinkles!) I also get indentations almost every spot I get injections but they bounce back after a month or two.

My hairline still keeps moving back, but I do see some hairs poking through. One thing my doctor mentioned is that this is a disease of caucasian women, which I find interesting. I wonder about an environmental trigger (watch the movie Plastic Planet if you get a chance). There is no alopecia in my family. I eat organic food most of the time. And I now eat gluten-free, soy-free, dairy-free when I can (this is new since the FFA.

Thanks for starting this group, and thanks for sharing all of your stories. It has helped me a ton.

PamW - it is the Classic Clean 1% zinc for the Head & Shoulders. The DHS shampoo has 2% zinc in it.

Ellen and I see the same Dr. Which is very interesting hearing our different treatments, but yet some of our early symptoms and such are very similar. Good to hear you have had the dents dissapear that soon. I've had mine 1 1/2 months now and no signs of dissapearing. I use the generic Retin-A on my face for my rosacia and the bumps that go with it. So far I don't see a change. Still have bumps and a red face. I've been teased since I was young about my red face and how easily I get "embarassed". My rosacia has bothered me more over the years than the hairloss. I really feel that FFA is caused by something in our environment or a chemical in a product that we have used or ingested. I have been on antibiotics alot over the years. I wonder if that has helped in keeping my FFA from being as advanced as others that have had it as long as me.

To Minnesota Mom:

I'm Black, and i have it; it could be more prevalent with people of European descent, but it's not exclusive to them.

Hi, I agree about antibiotics destroying your bacterial balance. I always take the probiotics if I MUST take an antibiotic. Recently I asked my doctor what I could do to improve setting off this aauto-immune disorder. She recommended probiotics and stree reduction. I had not considered taking probiotics all the time. Thanks for the reminder.

Another question. I'm going to try Biotin - does anyone else take it? I know these things can be false hopes, but why not?

Good morning everyone :o) I hope everyone has a lovely morning, evening and night. I'm off to work in a minute. Can I ask 2 questions. 1. Do those who have whispy bits of hair where thier hairline once was, shave those bits off? And how long do they take to grow back and does it irritate that part of the scalp? And also, Who else suffers from allergies? I have excema, hayfever, allergic rhinitis and asthma. xx

Minnosotamom, Please do inform your derm that Black women (indeed females of all ethnic groups) get FFA. I am Black, Lace has already responded to you on this forum and I know of another Black British lady that has FFA. So out of a total of 32 females that I now of with FFA - 3 of us are Black. This condition is exclusive to women that is about all that can be said of it and age appears to be a factor. Welcome to the group, Deb xxx

I wonder if men do get it but dont think of it as anything other than going bald?

Hi Liz, It would be lovely to meet up, I am in Surrey but can of course drive to meet up with you.

I don't have any medical condtions, apart from FFA! I did start another thread 'other autoimmune related health problems' so I am keeping any watch for any other nasties happening in the future.

I don't have wispy bits at my former hairline. Last night whilst taking off my wig I accidently 'waxed' about half a centimetre of hair off my hairline. I was using wig tape for the 2nd time and I took my wig off, this left the wig tape on my head. I should have used my rubbing alcohol on a piece of cotton wool to remove the tape but I didn't bother and just pulled it off, thereby effectively waxing some of my remaining precious hair. It came out with no pain as it was already about to fall out. I found it quite funny as I am running about like a headless chicken trying to save hair and I go and wax myself! XXXXX

Rebecca I agree with you 100%. I really do have a strong gut feeling that FFA is not a rare condition as the medical profession thinks, it is just under reported. My first thoughts were that I was just losing hair because of my age (48 at onset) and I am certain that many other ladies think the same. I also know that going to see a Dr about hair loss is very upsetting and many people most likely put off going. I had a very unsympathetic response from my GP. I didn't know that guys get it but if they do then it would just be written off like you say as androgenetic hairloss.

For ladies in the UK
Saturday 12 October 2013, Alopecia Conference in Durham organised by Be Bold Alopecia Awareness, cost is £30.00 inc lunch and evening buffet. I have just booked myself a place. Looks like a great event to get info/support/advice

www.bebold.org.uk