Replies to This Discussion

Permalink Reply by Sad in chicago on June 29, 2017 at 2:57pm

When I was first diagnosed about 3 years ago, Plaquenil was offered to me too.  As I have stated here many times, although I would love for a stop in progression, or renewal of hair, I was assured that nothing has ever been really successful as far as the medical community was concerned.  Therefore I chose not to do anything but learn how to live with it.  I will say that I have lost a lot more within the last couple of years and am now down to replacing hairpieces on a yearly basis due to the continuation of loss.  But, I think there is no other choice.  The summer is the worst now that I need to tape the front and side of my pieces......but when everything is fitting fine and I am not being active (perspiring) I look great and with the amount of money I have spent on the pieces, feel fairly confident and comfortable.  I guess I will have to work for the rest of my life so I can pay for my hair!!!!  The whole thing is awful; I hate mornings when I wake up and pass the mirror, I am still embrassed at home when not wearing anything, would never leave my house without a hat or my hair, but I love my new eyebrows which I had tatooed and make a huge difference in how I approach my day.  No easy answers, but I chose not to pump myself full of more stuff that most likely would not make a difference anyway, and besides the hair pieces what about the cost of all those medications which you all confirm for me are pretty much not working.    

Permalink Reply by Airam-FFA on June 29, 2017 at 4:21pm

I agree with you about the medication and am trying to learn to live with my increasing loss along my hairline.

I would love to know when burn out will occur.

Best wishes
oXO

Permalink Reply by Sad in chicago on June 29, 2017 at 4:55pm

Does burn out mean that it stops progressing?  No idea.  As I said, mine has progressed a lot over the last two years, and I still have a nice amount of hair on the back of my head, but front top and sides awful.

Permalink Reply by Airam-FFA on July 2, 2017 at 4:32am

I don't really know about 'burn-out'. I assume the hair loss will stop progressing at some point (hopefully before it ALL falls out!). I wonder if anyone on this site is able to let us know if they have reached 'burn-out'?

oXo

Permalink Reply by Minter on July 2, 2017 at 8:19am

I am taking burn out to mean that the FFA has "burned itself out" so I guess that that means for me that my FFA is still burning away! I am with you Sad in Chicago, no meds- I seem to be losing hair at a steady pace along the front and sides and now my top seems to be thinning too, which would be happening either with or without meds, albeit at a possibly slower pace.
But to be honest, I sometimes wish it would just all fall out, it would be easier to deal with then this weird half here-half not here mess of hair that I have on my head now :-(

Permalink Reply by Airam-FFA on July 5, 2017 at 11:59am

I know what you mean about the part/half stage. I sometimes think that it would be better if the FFA had reached its stopping point so that I would know what I eventually have to deal with.

xOx

Permalink Reply by illustr8r on July 6, 2017 at 3:55am

I'm cutting my hair pretty short on Friday. I'm tired of being reminded of the hairstyle I had that just doesn't work anymore. I've always had bangs so it'll be a big step to shorten those but this wispy business has got to go. God forbid there is a breeze! I agree I just want to know when it's going to burn out and stop it's progression. It's been over 5 years...is there a general timeline as to when it stops? The dr know nothing. It's all a Hail Mary pass with the drugs.

Arg!!!! Stupid disease!

Permalink Reply by Sad in chicago on July 6, 2017 at 10:21pm

I have found that cutting it pretty short and having pieces that blend in and cover the front and sides of your head are best.  If it gets too long the stuff sticking out is unruly and doesn't blend so well -- at least for me.  I have always had a sort of pixie look with banges and layers so this works well for me.....if you could call it well.  I call it beyond stupid.  Also since the back is clipped into the back of my head it is easier to blend when shorter.  I started with clips all over, just a few, with a fairly small piece.  That lasted about a year.  I went to another piece was larger, but also clipped in.  Soon we needed to take the clips out from the front and tape the front.  Then I needed to get larger pieces that fit and are also taped around my ears (tough with glasses.....I looked like I am drunk if I don't get them on right), and now all the tape is starting to itch badly and irritate me, so I am wearing surgical tape on my sides around my ears so that tape from the piece goes on that instead of my sensitive skin.  It is a continuing work in progress and so pisses me off.  I too have considered shaving my head, because when my hair is all pushed back and I am wearing my make up it is not horrible, except the skin on my face is a different color after all these years of sun.  But I don't have the guts yet.  If I were younger and fresher I would for sure!

Permalink Reply by Minter on July 7, 2017 at 9:34am

illustr8r, good luck with your haircut today, I am sure it will come out wonderful! 

Sad in Chicago,  I feel so bad that you have to deal with all these clips and tapes, it sounds like a nightmare :-( this disease is so unfair.  I am of the same mind as you,  if I was younger and fresher my head would be shaved too- I am so tired of being so self conscious of my hair All The Time. 

Permalink Reply by illustr8r on July 8, 2017 at 3:14am

Hi Minter!
Haircut was a success! I'm very happy! My dear stylist is on this rollercoaster with me bless her heart. I told her I didn't want to see or feel my hair. When the wind blows I want to be able to shake my head and have the hair fall in place. I was willing to go shorter but she didn't think it was required. It's still a pixie for sure and shorter than I have ever worn it. Fingers crossed I can maintain this style for awhile! She said she has another client who is losing hair along the side of her face. At first the lady said it was from her sunglasses but it moving faster past that reasoning. If it's FFA-just how rare is it to then have two clients with the same condition?

Permalink Reply by Minter on July 8, 2017 at 9:14am

Yay!!!! I am so happy for you! It is amazing how a great haircut can make all the difference in the way you feel- I also went 2-3 inches shorter a couple of weeks ago, it is still a bob and I have to pin it over my ears when I "go out in the world" to keep it from blowing back, but I am happy with my new haircut too. My own hairdresser said she has another client that she thinks has FFA and I am in a small town- I think there are a lot more of us out there who, like that woman said- it is just from wearing sunglasses, or aging, or whatever reason they tell themselves. I know there is because I see others like me when I am out and about- no hair on the arms and our lovely telltale band of lost hair :-(

Permalink Reply by Sad in chicago on July 8, 2017 at 9:24am

i don't think it is that rare as my hairdresser/wig specialist has a booming clientele. She deals with FFA, all Alopecia's and chemo hair issues. She has several FFA clients. Glad the haircuts are good. Hang in there.

• ‹ Previous
• 1
• 2
• Next ›
• Page