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Comment by Kristen P on August 18, 2015 at 12:17am

I'm seeing my doctor at Northwestern Hospital (in Chicago) in two weeks - I'll ask her! 

Comment by Classical Anne in NC mountains on August 17, 2015 at 8:53pm

Good questions, Lo.  Unfortunately, I also have androgenetic alopecia -- female pattern baldness.  Unlike male pattern, on us it is diffuse thinning throughout, and in my case two areas at the upper back of my head [just beyond the crown] are now revealing a nickel spot, and on the crown there are shiny bald furrows about the width of my littlest finger.  Truly more scalp than I ever thought I'd be sharing with the world.  But in other ways, I am fortunate that I had a relatively low hairline to begin with.  So I lost the first inch or so, starting with a defined widow's peak, without anyone but my hairdresser and I noticing it.  Now the tide is waning more rapidly and visibly.  And as I said in an earlier post, the remaining hair is so thin on top that I have to reach back from the crown and pull forward to have any bangs at all.  New found sympathy for male comb-overs.  In addition to the 2 types of alopecia, I am also on several long-term maintenance medications for a variety of other ailments [several of them autoimmune] -- and the chief side effect on some is hair loss.  All things considered, I count myself lucky not to have gone stark bald already!  To answer another question, I believe the thinning began about 10 years ago, perhaps age 55.  I knew nothing about FFA til I asked my primary MD 3 years ago if she knew why I was losing my eyebrows, and I showed her the angry red bumps at my hairline.  I had been on mega doses of Biotin supplement for several years, and wanted to believe the forehead issue was new hair growth.  But she was stumped and sent me to a Derm, who also was stumped and took a small chunk of frontal scalp for biopsy.  She was as surprised as I was at the diagnosis.  But again, I think I may have been lucky that she had never heard of FFA, because she immediately did some extensive research and presented me with all known options at my next visit.  It is most unfortunate that some derms think they already know it all, and are not open to new ideas.  For the next two years, my only difficulty managing the situation was emotional.  It is a very difficult thing to accept, knowing that it will continue receding until some unknown stopping point, and that it can never be reversed.  I bought a wardrobe full of scarves and headbands, and began thinking about a wig for the future.  I first wore one for special occasions a little over a year ago, but because I'm retired, I don't need it every day.  And my scalp does get irritated and itchy if I cover it often, or for several hours.  But until this summer, I was still able to disguise the loss, one way or another.  Now, you just can't miss it -- and you can see that in other folks' eyes.  But yes, I do intend to continue with the injections for at least the near future.  FFA slipped into high gear all of a sudden, when I missed two sessions [I usually go every 6 to 8 weeks, and get 15 to 20 injections].  And yes, we've had a ball with our precocious and busy, busy little 5-year old granddaughter, but time to go home and recover tomorrow!

Comment by Lo on August 17, 2015 at 4:07pm

Thank you, Classical Anne for your openness.  I know some women find it hard to be so bold about their loss, and their treatment & outcomes.  What I'm confused about are the nickel size bald spots throughout?  I thought FFA was just the front hairline?  Do you have another diagnosis causing the other patches, in addition to the frontal loss?  How many years have you been managing through this?  And lastly, are you going to get back on a regular schedule with the shots?  Sending you a huge thanks.  I hope you had fun with your grand-daughter.

Comment by Classical Anne in NC mountains on August 17, 2015 at 4:03pm

I probably should have added that I didn't even notice the loss of hair on my arms until something I read called my attention to it.  Sure enough, for the last couple of years I have had ONE persistent hair on one arm -- and it keeps growing in, long and black, until I clip it off again.  I never had much visible hair on my face, so no loss there.  But in addition to nearly invisible eyebrows [which I have become quite an artist with] I have lost all but 6 lower eyelashes, and that is particularly sad to me.  And unlike many grateful ladies here, my stupid stubborn hair still grows on my legs and underarms.  Amazing how differently we each react.

Comment by Classical Anne in NC mountains on August 17, 2015 at 3:38pm

Lo, thank you for asking about my progress. I've been out of state, babysitting my little granddaughter, and way behind on correspondence. I have used Rogaine and Elidel alternately for my brows -- but I was too late starting that, as they had nearly disappeared altogether. I'm just managing to keep a couple dozen strands alive. I chose not to use either medication on my scalp. And because I have a plethora of other chronic diseases to manage, I chose not to take any more internal prescriptions either. In fact, the only treatment I have used at all on my scalp is the steroid injections. And I am more convinced than ever that they held back/slowed down the hair loss. For nearly three years, my loss has been so gradual that even my husband could not see it. Of course, my hairdresser was well aware of it. But for a variety of reasons, I had to miss my last two appts. and now my hair is rapidly vanishing. I never quite imagined how much scalp I'd be revealing. Nickel-sized shiny bald spots throughout, and a frontal hairline equal to Queen Elizabeth the First. I have taken to wearing a nightcap when I get up, so as not to scare my family. Nonetheless, I'm OK with it, as I have had plenty of time to get over the initial shock and depression, and to invest in a couple of wigs and many pretty scarves for no-wig days. Of course I wish this frustrating disease had never visited me at all. But it's for the sake of the younger women on our forum that I wish for some medical magic! Surely one day they will find a way to prevent it, to detect it early if it comes, to treat it and halt it, and -- dream of all dreams -- to reverse it!

Comment by Joy on August 17, 2015 at 12:07pm

would someone give me the info on vitamin a as I have not been able to find the main article or any info

Comment by MJ on August 16, 2015 at 7:52am

Lacazette, I am due to see her in October. I will report back on everything she tells me.

Comment by lacazette on August 16, 2015 at 6:31am

Sadandunsure, I agree with you for being careful about have our hopes high up, but in my case and others in France, we have CCCA and losing ALL our hair. And we all took accutane treatment that changed our vitaminA metabolism for life

Those researchers explained in details how this is affecting our hair, so please understand that we are hopeful to stabilize the processus. If we take nothing to regulate what is going wrong, in a few years we will have no more hair (healthy lifetstyle or not).

I agree it won't be the 100% perfect solution maybe, but it can slow the process and it's what we need. and the time is playing against us, who all our follicles are affected

@MJ, please can you ask her if they are developping the inhibitor they found in clinical trial or if they just continue the research? Do you see her before 2016?  many thanks in advance:)

Comment by Sas Holland on August 16, 2015 at 4:37am

Ladies, there's no need to feel offended. Sadandunsure is just giving her opinion that she is being careful with this new theory about vitamin A, Because there are a lot of theories out there and none of them has been proven right yet. I totally agree with her. It also helps me (just like Mike's Deb) and it gives me so much rest not taking any medication or treatment and just try to live healthy and do Zen meditation and affirmations and accepting. So I trie not to think of my FFA all the time. As up till now there is no working treatment and it gave me such stress getting all excited about those new theories. But that's just how it works for ME. I wish everybody the best in dealing with it, whether it be trough medication or anything else, I like reading all those different sometimes critical opinions and I think that keeps us sharp.

Comment by Lo on August 15, 2015 at 11:15pm

Maddy-you've had FFA for 25 years??

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