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Comment by Halfbakedwho on November 1, 2018 at 11:22am

I still haven’t swallowed the Finasteride though I filled the prescription. “Trouble urinating”= one of the side-effects. Too scary. Thank you for the spearmint tea idea. Pourquoi pas...?

Comment by Afraid on November 1, 2018 at 11:05am

Hi Liz

I’d love to see some photos if you are happy to share.  Thanks so much.  Great to hear such good news. Xx 

ps Plf I’m off to buy some spearmint tea! 

Pps Cannabis oil medication now available on prescription in Uk!  I’m holding off on Finasteride for now but obv that seems like to most  appropriate next step if I can risk the side effects! 

Comment by Plf on October 31, 2018 at 5:17pm

Hi all, I am having 2 cups of spearmint tea ( organic) a day have to order on line as mostly peppermint tea in the shops .this is supposed to do what Finasteride and duasteride ( excuse spelling) do, I think it has helped with hair volume, I also find the Aveda dry hair shampoo great for adding volume to my hair .  Keep up the positive energy ladies..you definitely need it on this journey.  

.

Comment by Liz on October 31, 2018 at 3:58pm

I had my new hair system done on Sunday and I'm so pleased with it. It's better than the first one i had which was also lovely. This one was also less than half the price. I don't want to post pictures on here after I found  one of me on Google images after posting on here. I've am happy to message a photo to anyone who is interested in seeing the result 

Xx 

Comment by Minter on October 31, 2018 at 10:05am

Very luckily I've never had any itching or irritation from using powders to hide the loss/dull the shiny scalp along with my new favorite which is dry shampoo to pump up the volume!  

Your hair lady sounds very knowledgeable and glad you don't have to go the helper hair route quite yet-  Good luck with your new doctor and prescriptions, I hope they help you and Happy Halloween!

Comment by Halfbakedwho on October 30, 2018 at 4:41pm

Creepy Affliction. That could be my next screen name, BubbaLu. 

Last Friday I went to see a lovely nice woman who told me that since I have this crazy hair, it hides my loss, for the moment, more than if I had « normal » hair. So good for me, after years of cursing this hair, I am lucky to have it. She was like a really nice mom, and spent a lot of time with me, assuring me that my hair too could be matched for a bonded hair piece if need be. Yay! Then she chastized me (nicely) for touching and looking too much at my scalp « laissez votre cuir chevelu tranquille ! » says she. She also says « dont use powder on a sensitive scalp! » So just FYI - I was thinking of using powder b/c of the obvious thinning on top. I don’t know if you’ve heard that same advice? 

In other news, I was in Paris today to see my final (third) specialist who apparently is the Specialist of Specialists. I was supposed to get a biopsy, but he took one look at me and said « why give yourself another scar, it’s obvious you have an « alopécie fibrosante frontale ». So that was good - no biopsy. But he is throwing the book of all the meds at me. Ouch - heavy book. 

if you’re up to translating this with your anglo-Google, knock yourself out, but they are not hard to understand even in French. 

Med 1 - GRANUDOXY 100mg. - a type of low-dose anti-inflammatory antibiotic

Med 2- Finasteride 5 mg - I don’t know if I want to take this (!!!)

Med 3 - Clobex Shampoo - basically Clobéstasol shampoo that I put on my hair (dry!) and leave on for 15 minutes before rinsing. Fun times. 

Med 4 - Clobéstasol to put on my scalp. 

Could you share your experience of Finasteride? He says the goal is to keep my hair on my head, and stop the loss in its tracks, now. I am of course all for that - I am even wondering how I have wasted 18 months on these other regimens - however as we all know nothing really works all that well, if at all... n’est-ce pas... 

My consult took all of ten minutes. He measured my hair loss at 2-3 cm, spat out the prescription sheet, and voilà! I guess it’s better to not be too interesting a case though, right... : / ??

For any of you who are in France, this was Dr Pascal REYGAGNE at the Clinique Sabouraud à Paris. Google him, he’s a big famous hair-man too. Good for him. 

At least my Paris venture brought me to the American épicerie where they have fireballs and candy corn, so I am okay tonight.

Happy Halloween. 

Comment by BubbaLu on October 25, 2018 at 7:41pm

Thank you so much for your information.   You are probably one of the pioneers of this creepy affliction.   I cannot help but feel there are  more and more of us joining the ranks.    

Comment by CurlyK on October 25, 2018 at 7:24pm

It’s so hard for me to know when it actually started. I believe my hysterectomy in 2008 kicked it into motion. I started noticing it receding in 2012-2013. Really figured out something was wrong in 2015 and diagnosed in 2016. By then the loss was so great on the top and front I was wearing scarves. Never took any medicine as the loss had already mostly happened and I don’t like the side effects. I have some itching - just enough to be annoying at times - but no great side effects other than the loss of hair. 

Comment by BubbaLu on October 25, 2018 at 7:19pm

Curly, how many years ago did you get FFA and when were you diagnosed?   Did you ever take Plaquenil?

Comment by CurlyK on October 25, 2018 at 7:15pm

Hi ladies! I’m the gal in Florida who goes to Custom Hair Tampa Bay for bonded hairpieces. I had my hair “done” last week where they take the piece off and clean it and my scalp and reapply with new tape and glue. While I was sitting waiting for the clean piece to come back in, I measured how far back my hair loss went. I can put a full five fingers from my former natural hairline back to wear the hair still grows. So, a tremendous amount of loss for me. My hair piece is the only option I have and I’m so grateful for it! 

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