Comment

Comment by Afraid on October 23, 2018 at 2:03am

@halfbakedwho  I agree with everyone...i love your hair! Individual hair loss is highly relevant though as we are the only ones who can truly see how much we have lost.  I think during initial stages that’s why it’s hard for dermos to take us seriously.  Like Illustr8r & Annie May I had masses of thick hair (too much in fact) and now it’s fine and disappearing fast (hairline, temples, sides, around ears and nape) my ears have always been nicely and wisely hidden (they stick out!) they now poke through my thinning hair it will be impossible for me to sport a pixie look. 

I agree though In terms of regular hair systems most are straight.  I wonder if more bespoke services would be able to create a permanent wave? 

Minter I think I remember last year you said you couldn’t bear the intralace  on your head... how long did you manage to stick with it?  Does your condition need to be stable before intralace? 

Love to all you ladies x 

Windy autumnal day out there!! Hurrah though soon be winter and I can hide underneath a hat!!!!!!!!!

Comment by illustr8r on October 22, 2018 at 9:45pm

@HalfBakedWho Gosh girl you have so much hair! I’m envious! I’m like AnnieMay-fine hair. I used to have lots more of it and could rock a shiny bouncy bob like nobody’s business. Now, I’ve lost so much volume and my super short pixie looks almost slicked down because it’s just...there. My front hair line looks like yours. I think my right side is receding to match my left. Not fast, but it’s going. Dammit.

Comment by Halfbakedwho on October 22, 2018 at 12:04pm

well, thank you guys anyway! I don't know if it's comforting or distressing to know that my hair looks like your hair  : / - I suppose it means I'm in the right place, not that I had any doubt about that. My doctor consult is next week, and apparently, he will do a biopsy. Frankly, I have other fish to fry - I can't worry about my lousy scalp - but worry I do anyway. I sound more cavalier than I actually feel. 

I don't like the way headbands look - to me it looks like there's something to hide. It just seems to me I've lost quite a bit of hair since last June or so - it's probably just a centimeter but that's a lot at this point... 

Merci everyone. 

Comment by AnnieMay on October 22, 2018 at 11:35am

Halfbakedwho-I wish I had some ideas as well but I have the total opposite problem with thin fine hair.(I've always had thick hair until now) The top of my hairline looks similar to yours but I have more loss now on the sides above my temples making it almost impossible to hide with my ever thinning wispy bangs. My hairdresser has to keep going further back to find any bangs.

Minter-I've also thought about the interlace system but my scalp is so sensitive that I can't imagine having it on my head either. 

I wish I had something positive to share. Good luck with your consultation!

Comment by Minter on October 22, 2018 at 9:06am

@Halfbakedwho- my hairline looks very similar to yours, except you have that wonderful thick curly hair-love it!  

I wish I had some new, great, advice to give you-but I have none, other then using powders and makeup to help make the loss look less noticeable which is where I am at now even though I went to Lucinda Ellery last year for helper hair and what they did looked great and natural, but I couldn't handle having it on my head (they used the intralace system and added bangs and side pieces).  

I'm sorry that is all I've got, but I really hope all goes well with your consultation!

Comment by Halfbakedwho on October 21, 2018 at 2:27pm

Comment by Halfbakedwho on October 21, 2018 at 2:23pm

Definetly noticing more hair loss on the top of my head. I will be calling Any Davray (hair people) to see what one can do for me - it seems the hardest thing (I repeat myself) is the very curly hair. There’s a picture up on the FFA FB page of a woman who just got new hair - I am at the same place she was before she decided to get her hair. With the curls I am hiding the loss but it’s getting harder to do on top. If I’m feeling brave I will give you a picture - if you have advice (again it’s because of the kind of hair I have) please share.

Comment by BubbaLu on October 17, 2018 at 8:39am

Half baked - 

This Balding Buddy appreciates your humor.  Glad you are back.  

I have been taking Plaquenil generic version for 3 months now and had a check up yesterday.  My doc sees a lot less redness & bumps and there seems to be some new growth.   I take 400 mg a day.  Does anyone take a higher dose than that?   If this is working, I would like to up my dosage.    My doc has required bloodwork every month & vision  tests to make sure my body is tolerating the meds.   All appears to be okay. 

Comment by Halfbakedwho on October 17, 2018 at 7:59am

So my friends, am going to see a new specialist in Paris at the end of the month. Apparently, he prescribes Dustasteride. Side effects possible - trouble urinating, swelling of the face, breast pain... 

BUT apparently, it stops the progression of hair loss in 7 out of 10 cases, according to him. 

I feel like this is a real dilemma. I have definitely had more hair loss over the fall. I would, of course, love to stop it. But I don't know if it's worth it. I am feeling okay these days, if overworked, and though my hair is not great and it's hard to style, I don't think I'm willing to take this medicine. I sort of wonder why I'm going to consult him, but I think it's to feel like I'm doing SOMETHING at least, instead of watching my hair leave my head, passively...

I had stopped using the email where I was getting updates on this board but I just switched it so now I hope to be back here chatting hair follicle fun with all my balding buddies. Please take that well my sweets ; )

Comment by Afraid on October 17, 2018 at 2:05am

Thanks so much for taking the time to reply @ illustr8r

It’s good to know some hair grew back with clobestal and castor and that it’s hopefully stable Other than a slight flare...that’s very reassuring.

I guess I look on the internet and only see worst case scenarios and don’t know the time scale.  One year or so post diagnosis I am in a better place, I still can’t accept it.,still fearful and scared of what’s ahead but I have learned to seize the day and be thankful I’ve not got a terminal disease and my family are well and hair wise my mantra is ...this is the best it’s going to be.  I still hope by some miracle it will stop. 

It’s so difficult to know what to do next, it takes 6 weeks or so for a wig or hair piece.... sometimes you simply can’t imagine how it will look in 6 weeks... 

Im so grateful for your reply, thank you so much xx  

wishing everyone hope and strength to overcome or manage this condition and it’s effect on our lives 

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