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Comment by Afraid on September 26, 2018 at 11:09am

Hi I hope you don’t mind me asking for your collective advice...

im going to have once last attempt at stalling this wretched ffa/llp.  One year post diagnosis and one year of clobestal scalp solution & 10 months of hydroxychloroquine to no avail.  Shall I plump for doxycycline?  I haven’t tried it because of possible associated side effects and it would mean no sunshine or alcohol?? How very miserable although I’d do it if it would help?! 

Minoxidil?  Again side effects & some suggest more loss with?? 

Intralesional steroids?? Only tried one round as soooo painful...maybe I could be brave? 

I bought a wig some time ago to ‘deter’ hair loss haha! It’s way to ‘wiggy’!  Next step hair replacement system then forget about it?? 

Or anti inflammatory diet? 

Any ideas gratefully accepted. 

Comment by Glenda Australia on September 22, 2018 at 10:56pm

A message for Fifo now living in Spain and prescribed Avodart.  I also took Avodart (male medication)  for approx 5 months and while I believe it may have been the reason I now experience burnout suggest you seak a 2nd dermatologist advice.  My demo phoned to have me stop taking immediately as there were cases in Melbourne Australia were 3 women experienced clitosis growth and their voices had become deeper (male like), this is non reservisable. 

I am sure your dermatologist is able to find court records.

Good luck.

PS I don't use this site, replying to an email received.

Comment by Toby on September 21, 2018 at 11:14pm

Hello everyone. I just joined the group. I have FFA. I have lost hair at the front hairline and sides, and arm hair. Trying to deal with this.

I think the leading train of thought among doctors is that FFA is caused by makeUp, sunscreen moisturizer. Must be the chemicals in these ingredients. Maybe hair products as well. And maybe this triggers a gene so when we stop the makeUp etc the condition still does not go away. 

All of us had favorite make up, moisturizer, sunscreen that we used for years. I am going to take a photo of all the ingredients in my old favorite products that I used to use and take it to my doctor. If they could find the chemical, they would be closer to a solution. 

Great to find a group like this to connect with people that also have this. I never heard of this before I was diagnosed and then I tried to read as much info as I could.  Great you guys are out there!

Comment by Halfbakedwho on September 19, 2018 at 10:59am

Hi Liz and everyone

I am not too far from London but I don't think I could be free for the conference, unfortunately. On the other hand, I would love to read the article.

I have highlights in my hair and have had them since forever, and am 52 years old so yes, face creams, hair dyes - all of it. But my FFA started before I started with botox and fillers- so I personally don't make that connection for me. 

There was so much heat here in Europe this summer, and I was so sweaty, now with the cooler weather, it seems like I'm losing a dime-sized patch RIGHT on my forehead, where it's nice and visible.  I don't know that there's any connection, but I suppose I'm just a tad paranoid - understandably I guess. I'm a bit torn these days because part of me wonders if I'm doing everything I can to keep my hair- I forget to put my goop on my scalp, or I forget to take the Tetracycline... then I feel guilty b/c I think that (ha!) this could make a difference... 

Meanwhile, I wonder what I will do in a few months. Does anyone here get just a patch of hair bonded to their heads? God, that sounds like a weird question ; ). But that would be a decent solution, really... 

Please, Liz, could you link to the conference and the article?

Merci bien,

Comment by Bloomingdalekid on September 13, 2018 at 10:19am

Liz, thanks for sharing.  I wish I was going to be in London to attend - i think it would be very enlightening.  Interesting theory Dr. Wong shared with you.  I, too, believe it is a reaction to something we have done to our bodies - be it a chemical reaction to hair dye, moisturizer or Botox.  I continue to find it interesting that this is a “new” disease over the past 15 years - gee, about the time that women really started using Botox and fillers as cosmetic relief.  Or, new hair products that contain oils and sulphate, or perfume.  Some of us just react differently to these products - a small percentage - yet I feel that FFA is dismissed as “just an autoimmune disease” that caused it.  We women will not stop dying our hair, using moisturizer or using Botox and manufacturers of the above products would never admit that their products COULD have this side effect - it would cost them millions of dollars.  AND, the fact remains, we are a SMALL percentage of people with this disease with no cure so even most doctors dismiss it as “oh well, there’s nothing we can do about it.”  Please update this group after the seminar... I think we would all love to hear about it.  Thanks.   For sharing Liz.  

Comment by Liz on September 13, 2018 at 7:58am

Hi
I don't post on here much so I may well be giving information which you might have been discussing already.
Are any of you in the UK going to the Get Ahead of Hairloss event in London at the end of September? It has been organised by Dr Wong who is my dermatologist. She is a lovely lady and is doing a talk on scarring hair loss . I have been receiving updates on people who are talking at the event and it looks to be worthwhile going if you can get there. I got my ticket via Facebook and filled in a survey to get a discounted price.
Also, regarding FFA, I have been sent an interesting article on FFA stating how it's becoming an epidemic. Whilst chatting about the article to my hairdresser she had heard that there the disease could start as the result of a chemical reaction. An example is when you bleach your hair blond and then go swimming the chemicals in the water can turn your hair green......In the same way if you use a chemical on your hair and a different chemical on your face where they both meet a reaction takes place which changes the structure of the hair.
I used to dye my hair frequently and used face cream so it would make sense that where the 2 met a chemical change took place. In the 80s and 90s mum and me used the same hair dyes, home perms and moisturiser. We both have FFA.
Liz
x

Comment by Minter on August 28, 2018 at 9:55am

Grrr!  Forgot to add, yes- my hair is pretty much the same as yours.  I can more or less hide it day to day, but when I get it cut/colored/washed the hair loss is there for all to see.  

I finally started bringing my powders with me and fix my hairline/scalp before I leave the chair.  Luckily my hairdresser has been awesome and we talk about it all the time when I am there.  She also reassures me and says don't worry about it, you would be surprised by the amount of other clients that come in with hair loss worse then mine and I am in a small town! So in some weird way that makes me feel better :-/   So while my hair is wet and getting done, I try and just ignore everyone else in there that might be looking at my wet sparse hair and carry on as they say!!

Anyway, again- good luck @MnM, I hope you will find someone that you are happy with to do your hair!

Comment by Minter on August 28, 2018 at 9:49am

I don't know where you are located, but if you can maybe check out salons online and look at photos/reviews/facebook/instagram posts, that may hopefully help you narrow your choices down to a place you will feel comfortable with. 

Also if there are any shops that do wigs or toppers in your area, they often have a hair salon too or should be able to at the very least  point you to a salon that deals with "not-regular" hair.  

Good luck, it is hard enough finding a salon without having to add Stupid FFA to the mix!

Comment by MnM on August 27, 2018 at 9:35pm

I have to find a new hairdresser and I don’t know where to start. Right now I can still hide my loss, but it’s obvious when I’m getting it cut & colored. I’m dreading finding someone new and having to rehash the whole thing to a new person. If you have any tips please share.,

Comment by Wyobalance on August 17, 2018 at 1:31pm

Got an email from Erika B asking about Low Level Light Therapy.  At the CARF conference they say research shows it does reduce inflammation and nerve sensitivity.  But I don't think there is research beyond that.

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