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Comment by Minter on December 13, 2017 at 3:36am

HBW, I’m sorry you are going through this now also, I sympathize so much with you- it’s so freaking frustrating! I echo illustr8tr that you have to decide what is best for you, as each of us are going through the same thing yet it’s completely different for each of us if that makes sense!

I’m also one who has stopped all medications except for the odd use of Clobetasol only as a last result, I often use tea tree oil or a blend of peppermint oil & coconut oil on my hairline/scalp instead when it gets itchy along with on my forearms which are my other itchy spots.
My face is also ‘rough’ I’ve decided after the holidays I’m going to start treating myself to a facial every month or two, luckily I’ve found someone who is just starting out so her prices are very reasonable

:-)  so I can afford to do that! I can’t use retinol A or anything like that as my skin is too sensitive, but a facial every month or two, oh I’d like that please!

I get my lashes tinted too which is my little treat to myself and just got my brows microbladed in October which was The Best Thing I’ve done for myself since I’ve started with this stupid disease! The other Best Thing I’ve done for myself was 2 days ago when I got side pieces and bangs\fringe from Lucinda Ellery’s, I’m not thrilled about the every 6-8 weeks of maintenance/adjustments, but not having to hold my hair down when walking in the wind, and have to try and ‘artfully’ powder in ‘side hair’/front hairline & style it to hide the loss every. single.morning-well so far on day 2 I’m thrilled upon waking up with my new hair and I’m sure there will be ups and downs with it but faced with the alternative of life before helper hair vs after, right now I’m thinking that (hopefully) it will be worth it-  

it is so hard to decide what to do about the hair loss, try every medication there is, go with alternative medicine, do nothing- let it run it’s course, get a wig, don’t get a wig, shave it all off, who can say, each person’s experience with FFA is so different. This time next year I might decide to get more ‘hair’ or say take it off and shave it off. 

Comment by Halfbakedwho on December 11, 2017 at 2:56am

would you guys mind sending - maybe privately if you prefer - your headband sites, or wiglet sites? When I look at the headbands they are huge and not adapted to just hair loss in the front. Are they a pain to wear every day? I am projecting myself down the road for six months/a year when it may become a part of every day getting dressed : ( !!!

Comment by illustr8r on December 11, 2017 at 2:45am

Halfbakedwho-all we can do is the best we can. Listen to your dr and listen to yourself-you’ll know what the best plan of action is. I’m limited by sub par Kidney function as to what drugs I can take and how much. Say they develop a cure, I don’t want to have lost some degree of kidney health trying to save my hair with a drug that ‘’might’ help. I would take a risk on one that will cure it once and for all.

my biggest flare was caused I think by the shock and stress of my hubby being laid off from his job after 18 years. He was laid off in January and I was in a major hair loss flare in February. Life happens and does this mean every bump in the road my hair falls out? I hope not! Hang in there. :)

Comment by Halfbakedwho on December 11, 2017 at 2:12am

well, thank you for your supportive honest responses... very strange. No actually it's not strange - I can practically directly correlate it to some stressful news I received last week. The news has been resolved, but I can't wrap myself up in cotton to stay unstressed for the rest of my life which I still hope will be long. It's worrisome what you are saying about the Clobetasol. I'm on the mousse now, which I put on my affected scalp every morning. She told me that the next step is injections and of course a biopsy. So far I prefer to follow instructions : ( - at least I feel like I'm doing the best I can. I lost a centimeter on top of my head, and the patches grew on the left. 

In one thing I suppose I'm lucky - my hair is very thick, and always has been. So though the front is gone the rest is very much there. 

The whitish skin is just paler than the rest but not too horrible (so far). Spent last night looking up headbands : (. Going to make an appt at the hair place, but my kids say it still looks okay enough (they are brutally honest). 

Comment by illustr8r on December 10, 2017 at 10:35pm

AnnieMay- I had used RetinA for years and I really don’t know if it helped me with wrinkles or age spots. It’s drying and you have to watch your exposure to sun-which I did- but I have several pre-cancerous spots on my face that have to get frozen from time to time. I gave up on expensive creams from the Derm or at the beauty counter. I use Ponds cold cream to remove make up and Ponds Facial Moisturizer (but not to my hairline). I’ve been using Mabeline Dream Mousse and Mabeline Dream Velvet for my foundation. It covers my lumps and bumps and spots really well-and there isn’t any sunscreen which I know might be a FFA trigger. I put castor oil under my eyes and on my head at night. My skin- blotchy and red under the surface. It feels thicker. The worst areas are my chin and the skin about 3” out from the corners of my mouth. My forehead is smooth as glass-no need for Botox there! I use generic Latisse for my eyelashes-a good purchase almost equal to my micro bladed brows. Is a dailygrind isn’t it?  Out and about I look for women my age-envious of their hair and eyebrows and not a care in the world. They just get ready and go just like every other day in their lives...ugh. !!!

Comment by AnnieMay on December 10, 2017 at 9:43pm

Hi HBW and all, I'm so sorry you're having a recurrence. It does seems to wax and wane. I have good days and bad days. Beyond the receding hairline my hair is SO thin now and I don't understand why?

But honestly for me my skin issues are almost worse than my hairline because I can still hide my hairline. The texture of my skin has completely changed in the last year. It looks SO rough (like large pores) and mottled, "creepy" like skin by my temples, my cheeks, all over my face. I feel like I look like I'm 100 years old and it makes me cry everyday. I asked my dermatologist about it and she said "I'm sorry but it's part of the disease". Great. . .She said that some people come in to see her about their skin and she looks at their hairline and sees that it's FFA. Does anyone else have these dramatic skin issues? It's different from what I see online which seem to be more raised papules.

If anyone has any thoughts on what's helped their skin issues I would love to hear about them. Moisturizers, Retin A, foundations?

I don't take any meds and have basically stopped the topical steroids. I was diagnosed in April, I've lost most of my eyebrows (thank god for microblading), but like Beez I have crazy hairs showing up in places I don't want but a shiny forehead with no hair? I'm also convinced that it what it is and it will take it's course. . such a bummer. . .  

Comment by sallylwess on December 10, 2017 at 9:09pm

I agree with you on the meds, Beez.  I also have stopped all meds.  I don’t have chin hairs, so I’m lucky there.  I have not eyebrows, and probably 40% of my hair remains.  I only treat the itching and scaling when it bothers me with either clobetasol, or Protopic.

Comment by Beez on December 10, 2017 at 5:54pm

I too have stopped all meds. WhTs the point of taking something that isn't the cure? I am convinced that any 'improvement' is the natural cycle of the disease. It waxes and wanes.

My nails are a mess, my hairline is receding, I have no brows....but I get whiskery hairs on my chin. Go figure! LOL

Comment by illustr8r on December 10, 2017 at 5:32pm

@HalfbakedWho I’m sorry that you are having a flare. Yeah, who knows what to do with this stupid disease. I’ve essentially stopped any meds. The Clobetasol was making my temple area thin so you could see the blue veins really well. My family dr said it’s a strong steroid and she was concerned with me using it even a few times a week. She told me to give it a rest for 2 weeks. It’s been longer than that now. The only thing that I have been doing is putting castor oil on my head at night and limiting the gluten because I think it makes my itch all over-the one thing I learned after going off the AIP diet. I’ve said this in other posts- until a Wonder Drug for FFA is invented I’m proceeding cautiously with the random drugs they throw at this mess. Take care. ((Hugs))

Comment by Airam-FFA on December 10, 2017 at 4:13pm

Hi Halfbakedwho

I think that unless we are really fortunate, none of the treatments give very positive results :(.  I was diagnosed a year ago, although, I believe that I had had the hair loss for a few years before that, but my hair loss seems to have advanced at a much more significant rate since starting treatment!!!

xOx

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