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Comment by Sad in chicago on February 25, 2015 at 5:17pm

your picture is lovely.....do you wear anything or is that your real hair?  If so, I am very jealous, as it looks so full and healthy.  If not, great piece!

Comment by Mandy on February 25, 2015 at 5:11pm

Hi Folks, I haven't been on for sometime but felt that I should post an update. It's been 17 months since finding out I had FFA and I've been on the same journey as many of you... Check out my old posts it's all there... Medication, health, holistic therapies etc.
Today... I have not lost anymore hair and my eyebrow lose seems to have slowed too! I feel very positive that my FFA maybe burning out... Fingers crossed.
I eat healthy, exercise, and stopped all medication within the first 6 months of my diognosoies. I had councelling over a year ago which helped me come to terms with my FFA and learn to love life again. I strongly believe that stress was a big factor for me and when I learnt to let my worries go the hair lose seemed to slow down!
I wish you all the best on your own personal journeys xxx

Comment by Celia on February 23, 2015 at 12:42pm

Apologies - senior moment - I meant near the Beaconsfield junction on M40 for a get together in a few weeks time - hope all who came last time are well.x

Comment by Brenda, IL US on February 22, 2015 at 5:18pm

I don't know how to get my sideways picture deleted from here.  Bad lupus brain fog day.

Comment by Brenda, IL US on February 22, 2015 at 5:06pm

Donna i just ordered Cedarwood.  I didn't know Rosemary would help.  I'll have to order it next time.  I'm still using Clobetasol but i continue to have inflammation and itching.  I've lost a lot more hair in the last year but it doesn't bother me as bad as it did before i had my eyebrows tattooed.

Comment by Donna on February 22, 2015 at 4:36pm

Deb I saved your post from Nov 26 as the idea of autoimmune and using Rosemary and Cedarwood essential oils really appealed to me. I finally got around to purchasing the oils. I have been using clobetasol but still have inflammation and hair loss and want to get away from that. Exactly how do you apply the oils when treating active inflation. If you wanted to private message me send email to dthrasher@shaw.ca.

Comment by Celia on February 22, 2015 at 11:41am

Hi Pam and all others who met up here last year.  I am still around and keeping active !  I would like to try to get 'local'  friends' over again soon if you would all be happy with that idea - I know I would !

I have email addresses for most people in the group who got together last year but would like to invite others who are close enough to the Beaconsfield junction on M25 to message me with your e mail address then we can make a plan. x

Comment by Sad in chicago on February 21, 2015 at 9:59am

Lo -- the wig maker should be able to work with you regarding the clips.  That is their job.  Some toppers have a smaller mesh/lace base than others, and the clips can be re configured as well.  Backcomb the hair it will adhere to.

Comment by Pam on February 21, 2015 at 5:02am

Celia - glad you are still around and keeping active, I thought you had gone quiet for a while and wondered if you were OK!  Hope we may catch up again in the spring. Pam x

Comment by Lynn on February 20, 2015 at 11:10am

I was just reading through all the recent posts. I was diagnosed in the fall of 2014, but had been losing lots of hair for probably a year or so before I had the biopsy. I actually used to have a widow's peak, but my hairline has changed so drastically and now just look like I have a high forehead. I am the mother of 4 busy kids, so although I had a feeling that something was going on with my hair, I didn't take the time to really notice. My hairdresser said I should have my thyroid checked. I did twice, and came back normal both times. My dr said I should try taking biotin, which I did but it didn't help with my hair loss. So I eventually found a dermatologist that specializes in hair loss and went to see her. Upon her initial examination, she said, "Oh, I think I know what this is"! The biopsy confirmed it. Since then, I have been getting injections in my scalp every 4-6 weeks and have been taking Plaquenil, as well as taking lots of supplements, and eating a diet for inflammation as suggested by Debs on this forum. I'm also using men's rogaine and using a cream on my eyebrows and Latisse on my eyelashes. I have to say that I have noticed a significant decrease in my hair loss since becoming proactive and sticking with the treatment. I do still lose slightly more hair than normal I think, but it isn't falling out in clumps or clogging up the shower drain any longer. I am growing new hair just along the edge of where the scarred band is above my ears and on my forehead. I believe this is due to using the rogaine daily. The red inflamed area seems to have calmed down a lot, and so has the itching, thank goodness! So far I am hopeful that what I am doing is helping. It is quite a change for me and has taken some getting used to, but I feel it's worth it since I am seeing progress. Only time will tell! I know everyone has different outcomes with treatment, so I don't really know if this is just a coincidence, or if Its just in a resting phase, or if the changes and treatment is really helping. It's such a mystery. I wish you all the best as you go through this. It's such a difficult reality to face everyday.
Best, Lynn

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