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Comment by Brenda, IL US on November 13, 2015 at 10:21pm

I haven't been on here in a long time.  Thought the FFA had burned itself out.  Had to stop plaquenil that i'd been on for lupus since 2011, plus a major stress in my life and I've now lost another half inch all around my face.  Can't hide it anymore. I have to decide on a wig or topper or just shave my head.  I've tried just about every diet, cream, foam, injection, etc.  Acceptance is all that's left.

Comment by Wyobalance on November 13, 2015 at 2:26pm

Has anyone looked at if/how Mast Cells may be related to scarring alopecia.  http://www.aaaai.org/conditions-and-treatments/related-conditions/s...           http://www.hairlosstalk.com/interact/showthread.php/35425-More-on-m...

Comment by Mel on November 10, 2015 at 4:10pm

Steph: Regarding whether I've been told it's due to an over-active immune system... A dermatologist and her assistant both said I have FFA, and they explained that it's an autoimmune condition/disease. So, yes,it's tied to the immune system. As for itching, I don't know. I have been assuming that itching is a BAD sign? I haven't had a ton of itching at all, however lately it's been itching and, along with that, some days I see the slick line at the front hair line (back again) and the weird, aging type of skin on the upper portion of the forehead (on and off). So, I was assuming that this itching sensation, combined with these other bad visible signs, means it's acting up again. But I don't know. No big movement yet on the hair (that is combined with this itching), though I seem to be shedding all over now, more than usual. But still, I remain mostly concerned about the front. ... As for whether to pursue treatments, sorry to say it seems like a coin toss? From what I've read, trying to find scientific type studies about FFA, it seems that they've seen some women respond to treatments, but in each case they say they do not know if they would have responded even WITHOUT the treatment. The only little anecdotal story I heard which sounded interesting was when the dermatologists' assistant told me that one patient who lost 5 inches from the front to back has regained 1 inch of hair using the shots. ...I personally, however, have chosen NOT to take any pills or anymore shots (had one round), and I am not using the foam/topical steroid, either, (put it on about 3 separate weeks worth) since if it gets better, or worse, there's no proof that NO treatment will be the cause of that, either. From what I've read (it's all very confusing) it seems that you should definitely avoid the internal/pill form of steroid, though the topical stuff maybe could not hurt to try. And in fact it's supposed to help in some people, according to my dermatologist... I've read it can CAUSE inflammation, though I'm sure in some instances it can help, and my dermatologist said that is NOT possible. So, take what I "read" with a grain of salt, I suppose.  I wish we had answers. Maybe some day...

Comment by Maz on November 10, 2015 at 8:32am

Yes SJC I would like to hear of any success stories. Many of you imply that some types of alopecia can be treated but I haven't been convinced. The treatments seem to be like face creams (designed to make the sellers lots of money by selling hope but delivering very little that the cheapest moisturizer couldn't do). I'm really hoping that someone proves me wrong.

Comment by SJC on November 6, 2015 at 1:44pm

Hey there Maz,

I absolutely appreciate where you're coming from.  So few people seem to have positive results with the current treatments, or they aren't posting if they do. Maybe we should start a "Share your successes" discussion thread to compile this information in one place?  Is it futile to try the various treatments?  Maybe, but I'll keep going until I've exhausted all the treatments out there. It does seem to me that my case is more aggressive than others here.  I'm going through a big shed right now where I fill up hair brushes and my hair falls continually -  this has been going on since mid-September and I've lost another 1/3rd of my hair.  I don't hear stories like this from others on this board.  I also am in agreement with other posters about a biopsy.  What if it's treatable/curable?  Knowing exactly what I had was important to me. 

Comment by steph on November 6, 2015 at 11:23am

Hi Lauren, mnm and mel and thanks for comments. Lauren a friend of mine said she had hair loss at back of her head and acupuncture helped her, wonder if many people have tried it. Regarding how I feel about it all, I am upset and its always on my mind, I'm constantly thinking of what I can try next. I feel unattractive but my partner says he thinks it's normal and everyone has different hairlines. The few friends Iv told have been concerned about it once I'd pointed it out but said they didn't notice it before which is good to know I guess. I always wear my hair down but If I wore my hair up I'd say they'd notice then, that's how I spotted it, in a photo! MNM, yes it's interesting that it's happening to more of us premenopausal women isn't it, have you had tests for over active immune system too? I do wonder if it's all the things we use on our hair and face nowadays. Mel, the hair close to ear is very fine and may not grow anymore but I have got thick stronger hair growing above that, it might sound daft but I've cut this hair in the hope it will help stimulate and strengthen it. It's been there a couple of months so fingers crossed it's here to stay. Good idea with the steroid cream, I tested it for two weeks on a small area to make sure I'm not allergic, it's fine so far but I just don't trust these things the docs give us. Tempted to try salt water as its a natural anti-inflammatory. Have you been told it's down to an overactive immune system mel? Has everyone found the itching to be a bad sign of more hairloss to come or could it be that it's the scalp/follicles healing? Steph

Comment by Sas Holland on November 6, 2015 at 10:32am

Hi Maz,

I know what you mean. I am glad that I did the biopsy though, because as Lauren says, it could have been something else which maybe is treatable.

My FFA was very little active at that time and that's why I decided not to take any treatment at all (biopsy was over a year ago). I have not taken any pills or used creams or got injected at all and my loss is still the same as last year. It has helped me a lot not to think so much about it. in the first months I couldn't  stop browsing the internet for info and wigs etc and it made me very stressed. I just started to do meditation and affirmations and that helped me being less stressful about it. I don't know whether my FFA has burned out (hope so!!) or it just moves very very slowly. (It started about 11 years ago with my eyebrows slowly falling out, but I never had noticed my hairline until a doctor  last year (who I consulted for my eyebrows) noticed it. I just wish we know what starts this FFA!

Comment by Lauren on November 6, 2015 at 10:12am

Hi Maz, for me getting the biopsy was for peace of mind just to figure out exactly what was going on. Without a biopsy the dr can't tell you for sure that it is frontal fibrosing alopecia which is a variant of lichen planopilaris. Not knowing was hard because I didn't know if it would indeed continue and while I still dont know how fast it will continue I at least know that yes there is somethjng going on. Also, what if it had been something else that had been more trEatable, I wouldn't have known that without the test. So anyways, that's why I did it. I can understand your point though, it does seem as though the treatments aren't very effective at this point, which is sad, but as MJ said you don't know if somethings helping unles you weren't to have done it at all. And it seems that some things may work for some people, but not for others. Hopefully as they research this more they will find more solid evidence of how to treat.

Comment by MJ on November 6, 2015 at 5:22am

Max, I completely understand where you are coming from. We do not know the effectiveness of treatment but at the same time we don't know what would happen without it either. I have been at it almost two years and although I am still slowly receding, the million dollar question is how much and how fast would I have lost without treatment? Hence my fear of quiting.

Comment by Maz on November 6, 2015 at 2:15am

Hi all, It seems that lots of you have had biopsies and try various treatments but so far I haven't seen that there's any real success stories. So, what's the point of even bothering with a diagnosis, or biopsy. OK, if we can figure out what causes it maybe we can figure out a way to stop or, better still, reverse it. I'm not convinced that there's any advantage to chasing after doctors or treatments when there just aren't any results worth talking about. Can anyone give me any reason to try any treatment or even get a diagnosis?

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