Comment

Comment by Sas Holland on September 6, 2015 at 12:05pm

thanks for the links with opinions about transplants and FFA Sadandunsure, very interesting!

Comment by Joy on September 5, 2015 at 12:53pm

I have finally had time to read through all these posts - the vitamin a thing is very interesting as I had used ROC and Rodan and Fields until about 3 or 4 months ago - since then my LPP has almost totally cleared up. I do not believe that is all of the cause though. My beginning was about 2 years ago after at age 65 I was given a shingles shot, a pneumonia shot, and a shot of prolia. Many of these have metals that bind them and I also had a flu shot. I had also been using sun block - metals again. Like many of the others I had many stressful events - the prolia which is an osteoporosis injection is known to cause dermitis and I got almost a cradle cap around my scalp and then lost the hair and got biopsied and diagnosed with FFA. After reading many comments and no one having very good results and after trying the clobetosol I opted to stop the meds as all of the meds I took seemed to have pushed me over the edge and into auto immune land. I have for the last year and half used only deodorant from the health food store and have taken vitamins to cleanse my adrenals and liver and thyroid - the hair loss stopped probably a year ago but the LPP had continued until recently after the stopping of the vitamin a. I am definitely going to get a lymphotic massage - it is just shoulders up for those of you who have not heard of them. I have had some slight hair re growth but nothing much but am thankful that I only lost about one inch around my face and some behind my left ear. The vein prominence and the color difference have almost gone away. Also FYI where they did my biopsy which diagnosed FFA the hair regret - go figure

Comment by Sad in chicago on September 2, 2015 at 12:28am

Sad and Unsure: I am with you on both your comments. The research on transplants does not appear to be optimistic and yes, when I am "dressed" and wearing my piece I am OK, depending on how it looks that day, but without it I am a mess, physically and mentally.  I am embrassed for my husband, god forbid any of my children or grandchildren face time me before I am ready and the summer with the pool, persperation and outdoor activities is ruined.  But again, I am fortunate to afford the toppers and wear a real hair one for everyday that I style, dye and take ridiculous care of (follea, very good quality) and a synthetic that has the same cut so hopefully one thinks I am wearing my normal hair for exercise, etc.  It washes so much easier. The whole thing sucks.  If I were younger and prettier I would just shave my head and go for it.  All this messing around is exhausting. However, I was trying to be optimistic in my previous post so I will work hard to get back there!  Take care everybody.  I think I will leave this alone for a while and just try to do my "thing" and be what I hope is fairly normal and a productive part of the world.  Like I keep saying, "nobody got sick, nobody died".  In the scheme of things our suffering is slight if you think about all the other stuff that so many people have to deal with. 

Comment by sadandunsure on September 1, 2015 at 6:07pm

Sad...I agree with finnding a way to live with it. Chris has a badass haircut, it looks cool. Myself, I'm no where near needing a wig yet, but the women in my family suffer from hair thinning and end up in wigs, so I've purchased a few and plan to integrate them now while people may think I'm just doing it for fun, so if/when the day comes that I'm doing it out of necessity, it won't be much of a "shock". I guess my biggest issue is just the feeling of being inadequate or ugly when it comes off.

Comment by sadandunsure on September 1, 2015 at 6:05pm

Hey Sasholland, those transplants were not stemcell transplants, in fact, that's still a very small market and relatively new, I only see HASCI and a place in LA that does that. Also, it's inconclusive as to what would cause it to "come back" most studies, the hair grew well the first couple years, so maybe the incisions brought it back or maybe it's just in the skin. In any case, I just wanted to show evidence that it has been done...here are a few more opinions from derms/surgeons

http://www.realself.com/question/sonoma-ca-advances-transplants-fro...
http://www.realself.com/question/fort-washington-md-successful-hair...

Comment by Sad in chicago on September 1, 2015 at 4:55pm

Those who lose their eyebrows have a less severe case?  Very interesting, but I think it is subjective.  What is less, what is severe?  I did have some itching in the beginning and little red nodule bumps, stress at my job, and in my 60's post menopausal, but they are all gone now.  however, if you pull back my hair from front and around my ears, it is astounding to me how much is gone. I don't even know when I lost it, to be honest.  It just gets further and further back.   I think, at the end of the day, the focus needs to be on how to live with it without freaking out (and to be fair, who didn't or wouldn't?) and move on.  Severe, less severe, able to cover with your own hair (careful the wind!) or use toppettes, wigs, or whatever works, it is all in the approach and perspective.  To say everyone hates this is an understatement; but what choice do you have except to deal with it and get someone professional to help you feel and look your best.  

Comment by sallylwess on September 1, 2015 at 12:56pm

Ladies, this has all been very interesting.  I think these discussions have added great understanding to my own journey.  I had the first inkling of a problem in 2006 when I would have been 61.  I had a place on left temple that was very inflamed.  I went to a dermatologist and was told he didn't know what it was but that it might be psoriasis. Since I'd had psoriasis before, I thought he might be right.  He prescribed Protopic.  This treatment cleared up the spot, but I notice my hair came out in that spot as it healed.  It came out in a clump.

I'd noticed several years before that I had no hair on my arms, and I also notice I no longer had to shave my legs.  I was not concerned as I figured aging was the reason for this.

I had been on bio-identical hormones until about 2005 or 2006.  In 2005, I began using Obagi treatments on my face since I had discoloration from the hormones.  The Obagi treatments included Retin A.  I quit using this product in 2006 or so because my skin was so red.

In 2010, I lost my daughter to suicide.  Over the next year, my hair thinned considerably.  My doctor said it was from shock and stress.  In 2011, literally overnight, I lost my eyebrows.  They had thinned somewhat, but not badly.  I woke up one morning and proceeded to put on my make-up and was shocked to see I had no eyebrows.  

In 2011, my hair thinned, but my profile picture was taken in 2011, so you can see I had quite a bit of hair.  

In 2012, I suffered a head injury and was very stressed.  I lost a great deal of hair that year, and my scalp would itch and crawl.  My endocrinologist urged me to get a biopsy because she said my problem was not hormonal.  

Finally, in 2013, I did get a biopsy.  I had LPP and FFA.  I was shocked.  

I no longer can disguise my hair loss without wearing a hair piece.  I have treated with shots and topical ointments.  I have had allergic reactions to all treatments and broken out in rashes.  I no longer am treating my condition.  I am trying to learn to accept it and move on.  It has been a difficult journey.  I am grateful for all of you.

Comment by Maddy, California, U.S. on September 1, 2015 at 11:39am

Here it is Anne Louise:

http://www.bigmountaindrugs.com/

You have to fax/email them your prescription. I can order 3 bottles for less than $60 and it works great. I was buying Latisse at about $100 per bottle for a year or so before someone suggested this to me! 

Comment by Linda from Cincy on September 1, 2015 at 11:36am

While we're comparing stories I think it's pertinent to add that I was under extreme emotional stress from about 2005 to 2009 taking care of my Mother in her last years and issues around siblings and money that continued for a nearly two years after her passing.  I've noticed others have commented they had some extreme stress in the years preceding their diagnosis.

Comment by Anne Louise on September 1, 2015 at 10:08am

Maddy, can you share the web site you use to order the Latisse? Would love to get it for less than $80.

I was on Facebook this morning and for a minute I thought I was on this site. Someone had posted before/after pictures of their forehead. I instinctively studied the hairlines, (as I do with every human being I encounter!)and it sure looked like the beginnings of FFA. The post was about wrinkle reducing cream from Rodan and Fields! I've never heard of this business, but I wouldn't be surprised if Retin A is an ingredient! It seems to me the vitamin A theory is a very plausible one, especially given that FFA is a newer disease,(these creams were not around in the 70s) predominantly among affluent older women...those with money to spend on age reducing creams. To my knowledge I only used a retinoid cream a few times, years before I was diagnosed with FFA.

• ‹ Previous
• 1
• …
• 203
• 204
• 205
• 206
• 207
• …
• 507
• Next ›
• Page