Replies to This Discussion

Permalink Reply by Debs on April 1, 2014 at 5:36am

Alice thanks for your advice. I love aromatherapy oils. I use lavender, ylang ylang, orange, lemon in an oil burner sometimes to relax.

Permalink Reply by Alice on April 1, 2014 at 8:35am

I believe tea tre oil has anti-inflammatory as well as antifungal properties. I used it full strength by putting it on my scalp with my fingers. I also used an organic tea tree oil shampoo and condition for a while. Theyhelped my scalp more than a prescription shampoo my derm gave me, but made my fine, flyaway hair too dry. 

Permalink Reply by Debs on April 2, 2014 at 12:57pm

TURMERIC AND GINGER TEA TONIC www.blainearin.com

I just made a batch of this tea. It is easy to make and gives us another method to increase our turmeric and ginger intake, it tastes nice too.

Permalink Reply by DebbieT on April 3, 2014 at 9:43am

Hello there ladies.  I don't post often on this forum, I mostly use it for inspiration and advice!  I was diagnosed a year or so ago with FFA, but apparently it had been there for several years before, however because I had (emphasis on had) a lot of hair I didn't notice it.  I was also on medication (plaquenil) but gave it up after 6 months as it was doing absolutely nothing for me except ruin my eyesight which isn't too great as it is.  I take Vitamin B, Biotin 5000mg, Vit D and calcium.  In the last 6 months or so, I have lost my entire left eyebrow! I have lost approximately 40% of my hair along the hairline/temples in a band all the way around. I also trawl the internet for anything natural that can be used for this distressing disease.  Recently I came across a website that was claiming that Rogaine will regrow your eyebrows. As you all know,  we are always desperate for answers and solutions, so I decided to get some and try it.  I can safely say, that I have new hairs sprouting on both eyebrows! I use Renoken shampoo and conditioner, walk to and from work and try to relax as much as possible. I don't know how any of you feel, but to me, the loss of my eyebrows was a lot worse than losing my hair.. Oh and I also follow the Paleo diet, no gluten or dairy and I juice veggies everyday.  

Permalink Reply by Maggie on April 3, 2014 at 4:50pm

Debs

It's really interesting to hear that Rogaine is working for you. One of the first doctors that I saw mentioned it but then when I was diagnosed with FFA i thought that it wouldn't work because this is a scarring alopecia and once the hair is gone it can't grow back - this is obviously not the case in some circumstances.

I understand there are different types of Rogaine, but haven't  looked into it - what type are you using? I am willing to give this a go but don't want to go down the Planequil route as I am worried about my eyesight and the side effects.  

Permalink Reply by sallylwess on April 3, 2014 at 9:18pm

Debs, this is greatly encouraging.  I have to agree with you.  In some ways, I feel more distressed over the loss of my eyebrows than my hair also.  

Permalink Reply by Debs on April 3, 2014 at 9:22pm

Debs, I see you have the same user name as me, can u change the spelling slightly so people don't muddle us up and think we are 1 person.

I have a lot if ladies email me to get a copy of a fact sheet I have typed up and they are going to now contact you in error.

Many thanks from a fellow 'Debs'

Permalink Reply by DebbieT on April 4, 2014 at 2:04am

I saw that only after I had posted!  Sorry Deb.  I will change mine.  Just have to work out how! lol

Permalink Reply by DebbieT on April 4, 2014 at 2:16am

Hi Sally, that is my exact feeling! I can still brush my hair forward, wear scarves etc, but I am so bad with makeup and clueless with drawing on eyebrows, so when I saw the little sprouting hairs I was so happy. Just hope they dont fall too! 

Permalink Reply by DebbieT on April 4, 2014 at 2:14am

Hi Maggie.  yes it doesnt make sense does it?  Because as you rightly put, FFA is scarring and as my derm explained to me, its like a garden with no fertile sand.. lol ~ however, perhaps the eyebrows are different?  This disease is so strange and I think presents different in each person.  With me it has affected the left side of my face and head more than the right.  And it is the right eyebrow that has responded the best to the Rogaine.  The type I use is the Men's Rogaine, 5% minoxidil.  Apparently the women's version of rogaine is too weak.  I have lost most of the hair on my legs and arms too.  (not too concerned about that!).  I have just just kind of accepted it as part of life, pray daily for a miracle, however do continuously trawl the net for new options.  I don't fiddle at all with my hair after washing it.  I found that the styling added to the shedding.  I wash and wear it, and my stylist has cut it into a short bob.  I have a natural wave so it works fine.  Mornings are traumatic for me as I never know how the hair is going to turn out ~ the little I have left. Life goes on, without hair, and I guess I should be thankful that it is not life-threatening :)

Permalink Reply by Anne Louise on April 4, 2014 at 9:24am

My dermatologist recommended Latisse for my eyebrows and when I expressed doubt due to the scarring nature of FFA he replied that they eyebrows may be different. He postulated that the follicles may just close up rather than scar over; I thought he was just giving me false hope after delivering the devastating diagnosis. But being desperate, I splurged on the $80 for the tiny bottle and I was surprised to see some new sprouts of eyebrow hair! This after 4 weeks of using Latisse nightly. However the outer portion of my eyebrows have been gone the longest and nothing is happening there.

With only a few sparse hairs where my once dark thick brows used to be I have finally had enough. I'm getting micro pigmentation done in two weeks! This woman has been doing this for 20 years and is a true artist. People fly in from all over to be treated by her. If I'm bold enough I will post pictures. I swim twice a week and do weights at the gym twice weekly (although I haven't been since my diagnosis...no motivation), so between water and sweat the makeup just doesn't cut it. I agree that the eyebrow loss has been much more devastating, no way too disguise it except using a pencil.

Permalink Reply by Catherine on April 25, 2014 at 4:53pm

Hi everyone, I have also stopped taking all medication recently. I was diagnosed with FFA in November 2012 and since then have been on every medication under the sun (Plaquenil, Doxycycline, Cyclosporine, steroids, Cellcept...) but have decided to stop putting my body through such stress. At the moment I have lots of scaliness, itchiness,  'plugging', and new red lesions appearing on the front of my scalp. I am losing much more hair on the right side than on my left, which is strange (and now have a large bald patch on the right). Does anyone recommend anything natural that might relieve the dryness in particular? I have tried argan oil, tea tree, and aloe vera, with not much luck... The tea tree is soothing though.

Thank you so much!

• ‹ Previous
• 1
• 2
• 3
• Next ›
• Page