Comment

Comment by Jen on February 19, 2015 at 11:56am

Does anyone know when FFA reaches burnout stage?

Comment by Jules Australia on February 18, 2015 at 5:45pm

Hi Pams (Jules Australia) from Fernvale (near Bribane/Ipswich, Qld) I. Have ffa/lpp (diag by biopsy July 2013), but self diag about 4 weeks after onset of sczalp pain/tenderness, wierd creepy crawly feelings, itchiness & bizarre hair growth/texture changes, frontal bi-temporal loss etc. Has progressed around ears (behind, in front & above). Considered hydroxychloroquine (plaquenil) but decided pootential eye toxicity side effect too risky. I take nothing as believe nothing effective/without harm out there as yet. Scientists still researching, still a lot of unknowns on this nasty chronic disease. I've done a fair bit of research so far, (ncbi.nih; jid-journal of investigative dermatology&others). This is a great supportive site to discuss topics with women going thru similar dilemmas; Although I am sorry t hear you have been diag with ffa it,s good to talk to someone who lives close to me. I have been trying to find woman around Brisbane area for a while but most comments seem to be fro m UK or USA. I would be happy to hear from anytime you need, even if just to vent. Jules

Comment by Pams on February 16, 2015 at 12:03am

Hi....I am new to this group.  I was diagnosed with ffa in December last year   I am on plaquenil....which does make me feel slightly nauseas.  Am also using minoxidil once daily but last Friday was given kenacort A10 injections to front & neck areas of scalp.  I have some itching. Is anyone else having these treaments?  Is there anyone  else from Australia?

Comment by Alice on February 14, 2015 at 9:29pm

Claire, I had 2 derms offer me dutasteride but decided not to take it. For those who do, I believe the current thinking is thatbonce a week is enough, rather than daily. So far as I know, I am the only one who has been using spearmint to lower testosterone levels. My hairloss has been minimal and I have had some wispy rrgrowth on the sides. I also use plaquenil, betamethasone diproprionate, elidel, and rogaine. 

Comment by claire on February 13, 2015 at 9:02am

Hi everyone. I have just had an appointment with Dr Paul Farrant in Brighton. He has prescribed Dutasteride. Has anyone used this drug or had any experience of it. I'm a bit worried as this is experimental treatment.

Comment by Jen on February 9, 2015 at 2:17pm

Me too Anne. No more ponytails or updo. I liked wearing my hair half up and half down. I always wore it off my forehead. That style suits my round oversize face the best. I do not look good in bangs.  Anyway, like I said before, I am scared of the big stuff not this annoyance. 

Comment by Annie on February 9, 2015 at 10:43am

Jen, my story is so similar to yours.  Several years ago I just couldn't get my hair to look as good as it used to.  I tried different haircuts, shampoos, root lifters, and hair spray, and nothing seemed to help.  I now think that that was the early stages of my ffa.  I'm desperately trying to hang on to as much of my hair as I can, but sometimes wonder if it won't be easier when it gets to the point where I can just pop a wig on in the morning and not spend time trying to make my hair look normal.  The one thing I miss the most about my pre ffa days is being able to tuck my hair behind my ears or make a pony tail on those bad hair days.

Comment by purplemainst on February 8, 2015 at 9:24am

Hi Jen,

Thank again for being there I as go through. I am going toward peace, slowly but I am hoping for true contentment with the situation.  And there is no way around that, have to go through it to get to it..  I so want to be that person who can put on a different look every day and go forward with joy.  

Comment by Jen on February 7, 2015 at 7:43pm

Purplemainst,

while we wait for the world to accept hair loss in women, we have to go on. I have found a lady on the internet who wears wigs and hair pieces. She is knockout dead gorgeous and her hair is fabulous. She is a great inspiration and shows how to wear the different pieces.

Comment by purplemainst on February 7, 2015 at 4:04pm

Hi Jenl,

Thanks for reaching out.  Had a moment where I could of spiraled down pretty low over this MESS, but I came here, let is out and picked myself up again and went out into the world.  My hair situation is BAD, no way to use anything but a wig or other covering.  I have had this issue for a long time, I just had no clue about FFA and things were very gradually and then only faced it when things were pretty progressed.  I just wish it was more socially acceptable for women to be balding.  Fragile today, but not giving in.  Thanks again for your messages. 

• ‹ Previous
• 1
• …
• 234
• 235
• 236
• 237
• 238
• …
• 507
• Next ›
• Page