Thank you, Linda, for such intriguing information, and very useful links!  I think I should add prolactin to my frequent blood labs, as I have a rather large collection of autoimmune disorder diagnoses.  Very interesting post!

You're welcome Anne, there does seem to be a link between high prolactin levels and autoimmune disorders in women in general.  I grow increasingly frustrated with traditional health care practioners who, rather than seeking to pinpoint the source of the problem as to why (in the case of FFA) our systems are attacking particular hair follicles, in particular parts of our scalp, instead choose to prescribe prescription medications that suppress our overall immune systems.  It's sort of like amputating a limb in order to treat an ingrown toenail. 

Very well said, Linda.  Now it's time to forget our hair [or lack of] and celebrate the Holidays with our families.  MERRY CHRISTMAS, everyone!

Merry Christmas to you all.

Thank you for the information about the eye problem and the prolactin levels, both very interesting and relevant to my history.

Have a peaceful New year everyone.

xx

Very interesting re: prolactin levels-seems there is much connectivity with FFA-I too want to wish you all a peaceful, joyful Merry Christmas!!

Dear "Will be Healed",

Welcome to the FFA forum!  You will find friends, compassion, and support here.

Your story is interesting, though you have my sympathy for the FFA diagnosis. 

Rather than send email to the whole group, as you did, you will get better responses and conversation if you just post on this discussion forum.  If you are signed in, then scroll down to the "Comment Wall" and enter your message in the small comment window.  Then click on "Add Comment" just below the window.

I am interested in the daily supplement you mention, moducare.  I am not familiar with it and don't believe I've ever seen it mentioned on this site.  Can you give any further details: dosage, form, generic?  You may have added something useful and important to this discussion.

Best Wishes!

Welcome.  

Yes, what is moducare?  Also interesting to hear about diet.  Now that a new year is coming, and we all need to diet anyway!, this might be a good idea.  Thanks joining and I look forward to hearing more about your progress.  Have you lost your eyebrows too?  My dermatolgist also said there is a socio-economic similiarity for FFA sufferers.  Interesting.

Best wishes for the New Year for all.

I looked it up, interesting.  So once again, the autoimmune system seems to be involved.  We have all noted this as a possible issue.  Is your hair really growing ba ck?  My dermatoligist told me nothing would grow it back.....some meds might help the rest from falling out though.  Regarding socio economic, I am caucasian, middle class, past menopause, but I have heard of several younger women such as yourself, including the other patient my doctor was referring to, in the discussion.  Thanks for the info

There's no doubt that high stress can trigger FFA hair loss, but it is not a cause.  As an autoimmune disorder, the possibility of FFA [or dozens of other autoimmune disorders] is already lurking in your body.  But stress can definitely set it in motion, or cause flare ups and worsening.  I am sorry that your job is very high stress.  Because FFA is reputed to eventually burn out on its own, and has predetermined boundaries on your scalp, I doubt that continuous stress would make you lose more hair than otherwise; but it may simply accelerate the loss, so that yours may burn out quicker.  That could be a mixed blessing.  Some days I wish my loss would hurry up and burn out, so that I know positively what I'll be left with, and go ahead and make my decisions re: wigs, hairpieces, etc. 

I think the idea of a socio-economic factor is pretty much being ruled out now.  It seems more likely that women in a certain social/economic level are more likely to pursue medical avenues of relief.

Thanks for the detailed info on Moducare!

Moducare on the way.....what can it hurt?  Happy to see some success with something! 

Hi everyone,

I just started the AutoImmune Protocol diet (AIP, which is a stronger variant of the Paleo diet) 5 days ago.

I have read so much on the internet and in books about it and I am very positive to give this a try because it will get to the root of the problem (leaky gut which seems to be the cause of all autoimmune diseases) and not just trying to fight the symptoms.

My derm wanted me to start on Cyclosporine A. But I feel it's very unhealthy for the rest of your body, so I don't want to try that at this time in my live. Maybe if the diet does not work at all and my FFA starts to really get active again and really starts to show I will change my mind about it. But for now It just doesn't feel good to put this  strong medicine in my body.

. This means I cannot have the test stemcell transplant also (even though my FFA is in remission now) , which is a pity. They only want to to that transplant if I am on Cyclosporine.

It is a big adjustment for me especially breakfasts, this AIP diet, since I cannot eat eggs, dairy (this means also no butter and ghee) , legumes, potato, tomato, sweet pepper(paprika), grains and pseudograins, nuts and seeds or refined sugar.

I am also not a fish eater, I just hate it. So its basicly just eating meat, moderate poultry and fruit and vegetables.

It's a elementation diet so after a while I can try to eat eggs and nuts and seeds and ghee and perhaps pseudograins again, one after another.

I remember some of you are on special diets as well, but forgot who.

I have read The autoimmune Approach by Sarah Ballantyne and The Autoimmune Epidemic by Donna Jackson Nakazawa.

Thanks, Sas, for the new info, and especially the reference studies.  Do let us know after a couple weeks just how hard it may be to stick to the diet.  And is it forever?!

The diet is interesting, but meat is very inflammatory I thought, so I am confused about what is ok and what is not.  I think sticking to low carbs and no sugar and eating as clean as you can, which you are doing with the exception to the meat, is the way to go.  Good luck!

well yes Anne and Sad, I was confused too at first, you read so many different things about diets and health on the internet. But these books really made so much sense to me and ~I have read many testimonials from people with (other) autoimmune diseases who felt so much better and had less flares of no flares at all anymore, that I am willing to try this.

I look at my FFA more as an autoimmune disease now and not specifis as a hair disease.

The Autoimmune Protocol is based on that there are 3 things that contribute to autoimmune diseases:

1: bad luck with your genes

2:environmental issues like toxics around us

3-the food you eat, this can cause a leaky gut

You can not do anything about he first two, but we can  change our diet.

oh and the meat has to be range-fed by the way

After a while you can add some foods again like eggs and nuts for an instance , and wait and see whether you don't have  a reaction on those  but mostly it is indeed for ever.

I hope I can try this for at least some months and see how I feel then.

Thanks again for clarifying.  My genes [and possibly environment] are so bad in this area that I have no less than 8 autoimmune diseases, most of them for 15 - 20 years so far.  My diet is restricted by some of these and/or by the massive amount of medications I take for them.  Which is why I have refused any systemic meds for FFA, but also already feel limited enough in diet.  I am trying to 'clean up' parts of my diet, but I know better than to think I could stick to further restrictions for life.  But I do believe the leaky gut syndrome is at the root of our problems, and fully support anyone's aim to tackle it with diet.  In my case, it will just be more moderately modified.

I'm very excited. A lady who I have known for some months told me that she has an intralace hair system. She has the most beautiful natural looking hair. I had even spent several hours looking at her lovely hair during a class we had taken together, and I would never have known that the hair wasn't hers. She explained to me how it's done, showed me the lace system close up, let me have a feel for her head....Blinkin marvellous! I'm going to save my pennies and have it done :)

What is an intralace system?  Does real hair get pulled through the lace so it all blends better?  Sorry.  I have not dealt with anything but clip in toppers so far.  Thank you.

She had it done in London by a lady called Lucinda Ellery. If you have a look at her website you can see some people's before and after pictures and some of them seem to have a similar type hairloss to ours.The lady I spoke to today said that it has changed her life. The real hair get pulled through the lace system along with real hair hair extensions ( I guess depending on what you want). The system gets put in place and then every so often you have it altered as your own hair grows. The lady I met today also swims in the sea every week and it doesn't damage the hair or the system. The hair is matched with her own hair so it all blends in along with some highlighted bits. The system is firmly in place. She also does yoga and nobody would know even when she bends over and her hair hangs down. Truly amazing!

Hi Will be healed: I am not sure about coffe, but I know caffeine is forbidden at first during elemination period, I am not sure afterwards. I never drink coffee, because I don't like it, so I didn't read the part about taht very well.

and Liz, that is indeed amazing, I saw the pictures! the only bad thing is that you have to go to London every 8 weeks or so. I can't find anything like that here in the Netherlands

Is there anyone out there who has found any improvement in FFA that can be attributed to medication ? Thanks !

I agree with MJ that Elidel has helped my brows, but not my hairline. I use it once a day. Rogaine has thickened my hair so I can better hide the hairloss on the sides. I use the 5% liquid at night. Still searching for relief from bumpy, red, itchy, sore scap.

Elidel and Rogaine have helped some with my brows [but they were already too far gone to expect total regrowth].  Scalp injections have kept FFA hairline loss at a snail's pace.

I've been on minocycline (2 pills a day) for three months and have seen an improvement in redness at my hairline. I also have a new crop of baby hairs on the sides, which is great because my doctors were worried that FFA had moved there. I saw them on Friday and they are bumping me down to one pill a day to see if that still keeps it at bay. My eyebrows are still hanging in there, which may or may not be attributed to the one drop of Lumigan (a glaucoma drug that has the same active ingredient as Latisse) - since I don't know, I'm going to continue to use it!

I've been using Lumigan (Latisse) on my eyebrows and lashes for years and it has definitely helped me maintain both. My brows were almost gone at one point and now they look pretty good. Rogaine has helped thicken my hair in the front, so am able to hide the areas where hair is missing better. I take 1 amoxicillin and turmeric daily. I also use clobestol topical once a day. Quite the regimen. I had the injections for a year, but don't think it did anything that using the topical once a day didn't do. 

I tried taking all the prescribed drugs, but decided that they were having no affect on my hairloss. Over the last ten years it has just got progressively worse, thinner on top and at the sides.

I felt that many of the experts I saw were themselves not sure about the efficacy of drugs for this condition, and we were all guinea-pigs in their treatment!

 I became worried about the long term nature of taking fairly strong drugs on other aspects of my health.

Consequently I have decided to address the problem by the other route, ie hair enhancement, and eyebrow tattoos. Since I did it over a year ago my confidence has improved enormously, and a huge worry has gone away, both about my appearance (especially on a windy day!) and the thought of taking drugs on a long term basis.

Rogaine has thickened my existing hair considerably.  My hairdresser of 20 years says that my hair has never been thicker in the areas that haven't been affected by the ffa.  My eyebrows & eyelashes haven't been affected at this point.  I also think that the Plaquenil / topical combination helped to stabilize my ffa and keep it from spreading further back on my hairline.  I took Plaquenil for about six months before noticing that my scalp was less tender and irritated. I didn't notice any difference in the hair loss until I'd been taking it for nine months.  I've been taking Plaquenil for 18 months now, and am still seeing some hair loss, but I think it would be worse if I'd chosen to do nothing. 

I use Rogaine on my entire head & eyebrows. 

Hi MJ,

Can you please describe your new diet and tell us what supplements you take?

Thank you kindly.

Jen

MJ, I use the men's 5% generic foam Rogaine once a day in the morning & apply my topical at night.  My doctor said that the foam can be used once a day, but the liquid needs to be applied twice a day, so I've never purchased the liquid.  I agree that it's difficult to keep the foam out of my hair, but I have noticed that when I take my time and separate my hair into rows I can apply it mostly to my scalp.  I find that the best time for me to apply the foam is right after a shampoo while my hair is still wet.  I follow up with a leave-in conditioner before blow drying to combat the drying effects of the alcohol in the Rogaine. 

I was told by my dermatologist that NOTHING has been proven to help FFA.  So I stopped doing everything in terms of medications, rogaine, etc.  But it sounds like some of you are actually having success with Rogaine.....not replacement hair but maintenance and thicker with what is left.  Am I correct?

Sad in Chicago, You're correct that we can't grow hair where it has already scarred over, but I have thickened up the surrounding hair considerably.  My plan is to hang on to as much hair as possible until someone figures out a way to stop our bodies from attacking our hair follicles.  I also believe that using a topical on my hairline as well as taking oral Plaquenil is helping slow the progress of my ffa.  It has definitely lessened pain in the areas that are affected by the ffa.  It was too painful to push my sunglasses up on my head a year ago, and now I do it without even thinking. 

My existing hair has DEFINITELY thickened up using Rogaine...which helps to cover up the thinning areas in the front and sides. My hair stylist (of 20+ years), noticed it immediately when it started thickening up. I do have to say though that it took somewhere between 2-3 months of once a day use for me to really start noticing the difference. I had resigned myself to wearing a custom hair piece that I had made and have yet to wear it because my hair thickened up enough to cover the areas....at least for now (glad I have the hairpiece though as a back-up).

Thank you MJ.

I always have great intentions where my diet is concerned.

Other than "official" diagnosis how do we know if we have FFA?  Are eyebrows always lost with this condition?  I have loss above my ears that is creeping upwards.  My bang area is affected also.  The back of my hair used to be affected but it has thickened up since being on Rogaine.  I haven't been diagnosed with anything officially but have assumed it's Androgenetic Alopecia as I haven't lost eyebrows at all.  Would like to hear anyones thoughts on this.

Hi Rapunzel -- what a great user name!  We welcome you to this very friendly forum.  Of course, we all wish you didn't have to deal with this issue.  But since you do, you're in the right place.  As for the eyebrow issue, it definitely seems to be a common denominator, but it is not 'proof' one way or the other.  Most of us have experienced some degree of brow loss,  but definitely not everyone.  It does require a scalp plug biopsy to confirm the diagnosis.  And as you may have discovered, there are many, many forms of alopecia -- some of which even can be reversed.  But FFA is what is called a scarring alopecia, meaning the hair follicles die and close up permanently.  The 'scar' is simply rather shiny bald hairline.  It is a good idea for you to at least see a dermatologist, and confirm the diagnosis, as there are treatments to slow the progression and treat the symptoms.  But there is no known cure at this time.  Best wishes to you, and welcome to a place where you can say and ask anything.

Lynn, I have just read your story in an open email to all of us.  We're sorry about your diagnosis, and especially concerned about your rash and itching.  It sounds as if you may be allergic to the Plaquenil.  It's not likely a reaction to the steroid injections, but that's a possibility as well.  You probably shouldn't wait long for an appt. with your dermatologist -- see if you can move it up, or go see your regular MD.  Allergies that cause rashes need to be treated! 

I am glad you found this group, and know that you will find comfort from the discussions here.  It's not always good news we're sharing, but at least we're sharing and not facing things alone.  This is a very compassionate group of ladies and we're happy to have you join the discussion.  For best results in terms of people responding, you need to post your thoughts and questions right here on this web page.  You should see a small blank window with a tool bar of typical word document buttons.  When you've finished writing [and the box will expand as far as you want to write!], then click on the "Add Comment" button below left.  Best of luck dealing with your rash and itching -- I hope you're able to resolve it soon.