Comment

Comment by Anonymous on March 27, 2019 at 9:07pm

Has anyone used Toppik hair building fibers? It's available in stores in USA, similar to boost and blend.

Comment by illustr8r on March 27, 2019 at 5:53pm

Thank you all for venting about the good and bad hair days. I recently had 2 weeks of feeling horrendous and hideous. I went and got my hair cut and colored (in a new way) and that weekend a lady complimented me on my cute pixie cut. I floated on air it made me feel so good. Then, I caught a cold and my face broke out like rosacea but bumpy. The chicken skin, basketball skin texture is red all over the right side of my face and halfway across my left side too. I have no idea why. It's improving but god knows why it happened. I wanted to put a paper bag over my head and hide. Good feeling gone and it's back to my hermit ways. Ugh!

(((Hugs to all!)))

Comment by Minter on March 27, 2019 at 9:01am

Yes, Ditto Jules! You said it exactly the way I feel!  If it all fell out and I was as bald as a bowling ball, it would be (I think) a million times easier to deal with then this slow creeping half full hair half thin hair mess of FFA.  

Yay for trying Boost n Blend, I love it, hope it works as well for you!  Turns out I did lie about everything for my hair now coming from Australia as I realized that the hair fiber powder I use in front of my ears is made by Revolution which is actually a British cosmetic company-it holds up really well and it is cheaper then Boost n Blend so I keep the Boost n Blend for the top of my head and Revolution for the sides ;-D 

Comment by Jules Australia on March 26, 2019 at 7:39pm

PS Minter, I had not heard of boost n blend,..... just looked it up on their website & sounds good....am going to order gift pack & try it, thanks for the tip!! :-)

Comment by Jules Australia on March 26, 2019 at 7:23pm

It's amazing how many comments made on this site are SAME as what comes straight from my own thoughts or even things I have actually expressed out loud to those close to me when I try to explain what it can be like living with FFA/LPP. Minter, I remember saying same to my sister a while ago ...."I think it would be easier if the hair just all fell out, rather than putting up with the horrible haunting scalp feelings (waxing & waning),wierd deterioration of quality & watching it slowly but surely move back off my face, trying to hide the loss with the continual ongoing changes". Then the decision to get a freedom wig (which can be worn swimming, to yoga, exercising, whatever, ...hang upside down on monkey bars if you feel the urge), as you have to have no hair to  wear one of those" ..... no more fiddling around trying to cover or disguise the ever expanding forehead/hairline. Yes i'm sure it would be a shock at first, if it happened that way, but after going thru this, there would be no more humming & harring over what do I do nxt, how far do I let it go before going down 'helper hair' option, so on & so on!!! And  not to mention the problem of extra sweating when exercising, or even just in the hot, hot humid weather (which we've just gone through here in our Auzzie land, summer which seem to be getting hotter & lasting longer each year)....... sorry, over & out,  that's my 'ranting & raving' done for now!!!!!

Comment by Minter on March 26, 2019 at 8:02am

Jules Australia, yes-I am getting ready to order the full size bottles of shampoo/conditioner & protein shot from moogoo- I've actually been getting compliments on my hair which hasn't happened in many, many, many months! Or maybe even years!  Funny, I was just thinking now my hair stuff will all be from Australia, I use boost n blend and now moo goo, you guys don't mess around when it comes to hair products haha! 

Seriously though, guys this FFA is a killer to the confidence.  I'm now starting to do more 'outdoor' stuff as it is warming up and it is back to omg, where is the sun, is it glaring onto my thinning head- which way is the wind blowing- where is my hat- I hate it.  I hate how this rules my life and having to make decisions on what/where I will go or do or even how I will live my life based on my HAIR of all things.  It is not like I am ill, or weak or dying, it is because of stupid hair and that is what makes this disease so very, very frustrating.  I was at my workout class at the gym last night which is a really hard workout where we all walk out dripping in sweat, and I just think- wow, how much longer can I do this before I can no longer do it because of my HAIR.  It is not a thing where I can wear a baseball cap or anything either.  I've said it before, I sometimes wish it would just all fall out at once instead of the slow, insidious, torturous way it has of progressing.  It would almost make it easier to deal with instead of this thinning mess I have to deal with every day.  Ok, sorry rant over! 

Comment by Jules Australia on March 26, 2019 at 6:51am

Minter, glad to hear you really liked the Moo Goo shampoo & conditioner; I've been using it for 6 years now & found nothing better. Kandy15, so sorry you are having a crappy time dealing with this condition right now; it really does play havoc with our emotions & tests us to the limits; I totally get your feelings when you talk about being on the verge of tears. I know I've shed many over the past 6 &half years dealing with this ratty diease; from being told by specialists quote "NO, you do not have cicatricial alopecia or ffa", when I suggested that my symptons seemed in line with ffa/lpp from what I researched on the different types of hairloss. Sitting in the car crying my eyes out after receiving my biopsy (confirming ffa/lpp), relieved on one hand to finally have my suspicians confirmed, yet on the other hand feeling helpless in knowing this type of alopecia was permanent, often long lasting, & extremely resistant to the many treatments on offer; the frustrating lack of control many of us seem to have over the chronic symptons & seemingly endless slow progression; the many awkward situations it forces upon us. It can just become so frustratrating & even overwhelming at times;  I'm sure most on this site can relate to your feelings Kandy, & between all of us we could probably fill a swimming pool with the tears we've shed. I have a lot more periods now when I feel stronger, trying hard not to allow it to bring me down. But there's nothing wrong with having a good cry ....&   I still have those periods too. I think all of us here are brave just dealing with the challenges this condition makes us face each day, & we need to all stay as strong as we can for each other!   BIG HUGS to you Kandy & All of you lovely ladies. I would not feel as strong without all of you   xox

Comment by Toby on March 25, 2019 at 9:29pm

Hello lovely ladies, we all try to manage this as best we can. Diane, on dr Jeff Donovan’s website he has handouts on different medications including plaquenil. I have not been on this drug. You may want to get your eye doctors opinion but I think lots of people are on this drug for auto immune diseases.

Comment by Sad in chicago on March 25, 2019 at 6:05pm

Just came back from a trip to Florida and was reminded again, unfortunately, of how difficult this whole thing is.  1.) Which headpiece to wear to pool -- my wigs are so hot! And don't want to ruin good ones, but don't like the old ones and how they look, etc. 2.) what do I do when staying with others as a guest in their home.  Difficulties in the morning, and can never just hang out, and feel comfortable as have to wear piece so long for the whole day and night.  Just in general feeling annoyed.  Every time I think I have a handle on this, it just gets in the way again.  I have a new human piece on order now.  Been wearing blended pieces and wigs, but they end up looking ratty too soon, even though they are much less expensive.  This has been going on for six years.  I have progressed from clip in toppers, to taped in front and clipped in back toppers, to wigs customized to fit in front and on sides, to now full wigs.  HATE this.  Lost all facial, arm and leg hair years ago.  Have tatooed eyebrows, they look pretty good.  Just always thinking about this and having to deal with it.  At least during the winter here in Chicago, I don't need to change my appearance much.  I do work out a bit, and am always anxious at the gym less one of my pieces falls off when I get up off floor, or perspire.  But basically we are indoors so much that it is easier.  It is the outdoor lifestyle that gets in the way.  Used to love summer and hot weather, but not anymore!!!

I am not on any meds, gave that all up years ago, not taking any more chances with my health. Am a breast cancer survivor.  Just needed to whine a bit.  I will get back on track I know.  And half baked, every six months is like a new beginning.  Save your $ so  you can progressively add new pieces because you will probably purchase two a year if not more.  Yikes.....on top of everything.

Comment by Jennifer on March 25, 2019 at 5:04pm

Has anyone here tried: irestore, Hairmax, Capillus or excimer laser? What were your results? If it’s effective, it seems like it might be nice to try because of the lack of negative side effects.

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