Replies to This Discussion

Permalink Reply by Airam-FFA on April 26, 2017 at 1:02am

Hi Carol J

Thank you for this - very informative. I did buy a couple of AIP books and as it was just before Christmas, I didn't have time to take it all in as the diet is very drastic. The books are still beside me on my bedside table - your post has spurred me on to get out the recipes.

I have been on various birth control pills for most of my adult life - maybe a gap of twelve years. I have also been prescribed HRT pills alongside the BC pills. I then had a couple of years with a very stressful situation at work - which was when I first noticed my hair loss. I put my hair loss down to the stress and thought my hair would re-grow once I had left that position. Needless to say it didn't. Maybe four years after I had first noticed the hair loss, FFA was diagnosed.


I also wonder if the once per day suntan lotion had anything to do with the hairloss, as I have lost most of the hair on my body. Plus that would explain the hair loss at the front of my head, as I never put suntan lotion on my scalp.

I am constantly looking at people with 'high' foreheads to convince myself, that although 'I' know my hairline is receding, it isn't that bad for people to notice! Realistically, I know that this will not last, and I am hoping that the FFA will burn itself out sooner rather than later.

The people on this site have been very supportive. Beautiful people in this crazy world.

xOx

Permalink Reply by Beez on May 10, 2017 at 12:22pm

LOL, I think we all do that-- look at other women's hairlines....

Permalink Reply by illustr8r on April 26, 2017 at 1:49pm

Thanks Carol J for posting all of your info about diets and vitamins.

With kidney issues, it's crazy what foods are good and bad, and it'll be interesting to read more about these diets to see how many contradictions there are and if I can even attempt it! *sigh*

Derm thinks that I have had this condition for a few years. It wasn't "flaring" as it is now-triggered by a stressful start to the new year (job layoff), a cold/flu in February, in combo with what turned out to be a HUGE drop in hormones (I was peri-menopausal-then BOOM- I was done with menopause in less than 3 months) and a B-12 deficiency. A perfect storm of crap!

I'm on HRT now and I get B-12 shots every month. One side effect- my non-existent (but for a few wild hairs) eyebrows are coming in again. I don't know if that means my eyebrow area isn't scarred or what. Maybe it's a fluke to torment me...!!!

All the best to you and everyone. It's so good to talk about this bad thing. !!!

Permalink Reply by Lo on April 30, 2017 at 8:01pm

Hi, Carol J! And wow! Thank you! I use many of the supplements younare using and try to go AIP... I'm not always "successful" but eat pretty well. So I have to ask... since doing all of this, have you noticed a decrease in the scarring loss? How much, may I ask, have you lost around hairline? You sound so knowledgeable and positive! I love that. Thanks again for sharing all of this.

Permalink Reply by CarolJ on May 1, 2017 at 5:02pm

Hi Lo, If I remember right, I think I had seen one of your posts at some point in time after I started the diet and thought you had said, along with the supplements you were taking, you were doing the diet. I remember thinking thank goodness someone else is doing this and it seemed to be working. I didn't reply to that but just felt good about what I was doing cuz I wasn't the only one! I hope it is working for you!

As far as my hairloss, I used to have a widows peak and that is gone. It's about 2 inches wide in the center of my forehead but only about a fingers width receded (I guess thats about 1/2") And on the sides by the temple it is about a fingers width gone and then by the front of my ears (sort of top front...that hair that usually comes to kind of a point) is about a thumb print gone. So not too bad I guess. I definitely can hide it. I feel for those that need the hair systems or wigs. I want to say the hairloss has stopped but it really is so hard to say 100%. I think some of the hair behind the loss that was thinning has grown back in some...it doesn't look as thin. Definitely where the loss is, it has not grown back there. I also lost most of my eyebrows and got them micro bladed (tattoo) and feel sooo much better with that done.

I think one thing that may have helped me besides everything I mentioned already is definitely decreasing stress and also just really believing that what I was doing was going to work. It took a long time but once I started there was no turning back! Also, I think I was able to come to terms with losing my hair pretty quickly because I made the decision that if the hairloss got too bad, that it was hard to hide, I was going to shave my head and get a wig and maybe even tattoo my head with a really cool tattoo for when I didn't want to where a wig. And just a side note, I was on the strict AIP diet for about 2-3months and have been able to reintroduce many foods so it's definitely not forever but I guess you could say now I'm more Paleo (diet wise) but there are days when you just have to eat something that maybe you shouldn't.

I'm so glad that my "story" is giving someone some hope and positivity. I know everyone is different and know what works for one person doesn't work for all but I am convinced this is a really good direction to go.

CarolJ

Permalink Reply by Temmelou on May 1, 2017 at 9:10am

Thank you so much Carol for all the info.  I am taking it to heart and researching the sites and supplements.  I know it took a lot of time to write all of that, and be proud that it has sparked the interest of so many and given hope to them as well.  I am on board with you and working on diet, supplements and oils.  Time will tell if it helps, but if it doesn't help the hair issue, it is certainly a healthy way to live.  Its comforting to be in this journey with you and so many that have responded to you.  Good luck all and  lets keep sharing!

Permalink Reply by Beez on May 10, 2017 at 12:13pm

Hi Temmelou! If you need advice and support, this surely is the place. I would say to start the Plaquinil because studies are showing that IF it's going to help, it works mostly in the first six months of treatment and the earlier the better. I didn't think it was helping me til I went off and noticed a dramatic increase in hairloss in about 3 months time. As for hair coloring, I have asked two different docs and researched it, and have never come up with a definitive answer as to whether that plays any role. Has Anyone else have better info on that? Gahhhh, I hate hate HATE this disease!

Permalink Reply by Leigh on May 16, 2017 at 7:21am

I was also very recently diagnosed with FFA after I noticed the hair above my ears was thinning, with small areas of no hair growth.  No scalp biopsy as of yet but the dermatologist is a hair loss specialist and seems confident of his diagnosis.  I've spent many hours outside of work researching this condition.  I'm also afraid of any oral/systemic steroids and thus depressing my immune system, so for now, am using Fluocinonide lotion on my hairline with a f-up visit to the derm in a month.  I lost most of my eyebrows over the past several years (chalked it up to aging) and also just noticed also that almost all the hair is gone from my arms with little hair left on my legs.  It's unreal.

Has anyone else had a scalp biopsy?  Success with a topical steroid lotion or cream?  My Dr. strongly suggested steroid injections - has anyone seen their condition stabilize with this treatment?  How long did it take if successful, or is it not worth the pain and possible side effects?  I am devastated and not sure what to do next.  A close friend said, "well, the condition won't kill you!"  I know she's correct but everything is relative, and reading the posts here makes me realize I'm not alone.  Thanks so much for any information and advice.

Permalink Reply by Airam-FFA on May 16, 2017 at 12:56pm

Hi Leigh

I had the scalp biopsy - the thought of it was worse that the actual procedure. Though I wonder if it was really necessary. I am not sure about the injections - I read on here that they were painful and not very effective. I told my dermatologist that I didn't want them. I have a liquid solution to put on ? Clobestol which I use now and then if my scalp is really itchy. I am also not taking the tablets they prescribed as the side effects can damage your eye sight.

I am taking turmeric in the form of Golden Paste which is meant to help with inflammation. I also need to try the AIP Diet (auto immune Paléo/protocol diet)

Sorry that you also have FFA - but everyone on this website is so supportive.

xOx

Permalink Reply by Leigh on May 17, 2017 at 8:27am

Hi Airam - thank you very much for your reply.  I'm sorry that you, too, and everyone here has to deal with this condition.  I admire the collective courage on this forum, and the support is of course greatly appreciated.

I read your previous post about the sunscreen which I'm also wondering about as I found an article about a possible link as many people here probably have, too.  I've used a great deal of the stuff all over my face and body for many years and now, no body hair wherever I've used it.  One more question of the fifty I have for the dermatologist when I see him again and I've made an appointment for a 2nd opinion.  Re:  the injections, I found one study that stated a 97% success rate with this treatment, (only 62 patients) the follow up period was long, and above 30% were still in remission after 6 years.  But that's just one study, so I'm still on the fence as you are until I found out a lot more.  Also wondering if the biopsy is really necessary - if it's going to reveal one scarring alopecia or another, what's the point?  The treatment options I would consider seem to be the same but need to confirm this.   

Thanks too, for the diet suggestion, I'm going to look into it.  It does make sense as from what I understand, we eat far too many Omega 6's and not not enough Omega 3's, the former which contributes to inflammation.  Also, a pharmacist I met last year advised her sister had done a good deal of research on acidity in the body; she found that a certain brand of bottled water was highly acidic, and thus made her arthritis/inflammation much worse.  I'll try the turmeric, a friend of mine swears by it. 

I keep wondering what set all this off, and like you, the past two years at work have been exceptionally stressful with a new director.  Another part of the brew that contributes to this?

Thanks again so much for your advice. Please let me know what else works for you, and I will, too.    

 

Permalink Reply by Airam-FFA on May 17, 2017 at 12:04pm

Hi Leigh

I try to find and hang on to any positives that I can find. Keeping busy and trying not to focus on my receding hairline.

:) oXo

Permalink Reply by illustr8r on May 17, 2017 at 3:08pm

Hi Leigh-

I had the scalp biopsy done just for the piece of mind to know what I was dealing with. I've wasted a lot of time muttering to dr. about my hair loss to be told "as we age" but this time around the loss in the front of my hair was noticeable to my primary dr. and she ordered a batch of tests and sent me to a dermatologist.

My hairstylist calculated that I have probably had this stupid disease for at least 4 years. She quit waxing my brows before then because they were going away on their own.

I am going to do the AIP diet once I get past a big project and I can focus on coming up with a diet plan that is simple to follow.

The Clobetasol helps me. I had an itchy/burning spike earlier this week and I think it was caused by using a different shampoo. I need to toss the shampoos of my youth that smell nice and worked when my hair was normal. I use Nioxin (4, for color treated hair. I still put foils in my hair) and it seems to give my hair a little body and my scalp feels better.

Anyway, hang in there. I feel OK most days but I when the results came back I was very upset- and it's OK to be. ((hugs))

• ‹ Previous
• 1
• 2
• 3
• Next ›
• Page