Comment

Comment by Kath UK on July 22, 2013 at 7:42am

Happy Birthday, Celia! xx

Comment by Jules UK on July 22, 2013 at 4:35am

Happy birthday, Celia! XX

Comment by Debs on July 22, 2013 at 3:46am

Celia, Happy Birthday have a super day. XXXX

Comment by Paula uk on July 21, 2013 at 5:26pm

Happy Birthday Celia, enjoy your country walk.
Tuesday is start of the holidays !!!!!!
yes must meet up again.
Xx

Comment by Celia on July 21, 2013 at 4:28pm

Rita - that's the best post I have seen in months ! Thank you for that !
Pam - yes - it continues to be devastating and The Thing you wake up to face every day - well at least that is the way it seems to me. Plaquenil is hydroxychloroquine.
Paula- your hols must be starting soon - enjoy - and come on over to see me as and when you have time.
Simone - I reckon that Latisse must be in the same 'bracket' as Regaine - you have to use it forever or lose the effect. Eyebrow tattoo is the best thing (thanks Debs !).
I have a birthday tomorrow - starting with a country power walk with my husband and neighbour - great ! X

Comment by Rita - Canada on July 21, 2013 at 2:42pm

Hello all, Are we being mislead by being told these items work on 50% of us? Where are the people that any of these drugs have worked on? Give us some names, some proof. I appreciate that they are trying to help us & are doing their best. However if anyone has been cured of FFA, then wouldn't they be excited enough to let us know on this forum? So my question remains "Where are those 50% of us whom our derms tell us that one of these approaches has worked for?".

Comment by Pam on July 21, 2013 at 6:17am

Thank you SO much for all the information here! It is great to share this awful condition with other people who can really understand what one is going through. I know it is not life threatening, and you have to get it in perspective, but it still feels totally devstating for the sufferer. all the consultants I have seen in the UK have been balding men, and I don`t think they really understand how women are affected by hair loss!

Dr Mirmirani sounds great, but I live in the uk so can`t be part of her study unfortunately.

More information on the hair pieces would be good.
Excuse my ignorance, but is Plaqenil the same as Hydroxochloroquine that we seem to be taking in the UK?

Comment by Paula uk on July 21, 2013 at 4:06am

Hi All,
Just wanted to add my THANKS to all of you lovely ladies who have posted these wonderful and informative pieces - They are so helpful. Thankyou xx.

Comment by AC from CA, USA on July 20, 2013 at 11:29pm

Hi Ladies,

I will snap some photos of my clip design, but not until next week. I'm heading out for vacation tomorrow.

Simone--Latisse is crazy expensive, but the generic is not so pricey. I've gotten it on Amazon for less than $30/bottle and that lasts over a month. Well worth it to me! The stuff I use is called Careprost and there are active listings there now for $26.90/bottle.

April--I am just starting the Plaquenil in earnest, regular dosing. In the last three months, I took it basically only when I was freaking out and succumbed, but it was certainly not daily. Maybe twice a week at most. I've been taking it twice daily now for just a few days and I am trying to acclimate to it. It makes my tummy a bit grumbly and pained. That is a common side effect, but it subsides for some. I'm going to stick with it and hope that problem goes away.

Comment by April on July 20, 2013 at 8:26pm

AC-Just wanted to add another really big thank you for sharing all of the information from your doctor. It is unbelievably helpful for those of us who don't have access to doctors who know much about FFA. I would also love to see how you designed your hair clips. I haven't really started taking any medications yet, although I am currently receiving xtrac laser therapy. Have you taken any systemic drugs? Do you think you will start? Thanks again

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