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Comment by Pascal on March 2, 2018 at 2:35pm

I also read about oral lichen planus sufferers who found coconut oil extremly helpful so it might really be that coconut oil is really effective for all of us. I use Yves Rocher anti-recurrence dandruff shampoo frompomegranate peel, and no conditioner. I also found that vitamin D3 plays a huge role in our disease, and IAT suggested the combination of NAC+L-tyrosine and vitamin D3 for FFA. I will give it a try. 

Comment by illustr8r on March 2, 2018 at 2:34pm

@AnnieMay I use Loma Daily Shampoo (it’s for fine hair) and Living Proof, PHD (Perfect Hair Day) 5 in 1 Styling Treatment. I can skip conditioner in the shower and it beefs up my hair a bit and gives it a nice shine.

Comment by AnnieMay on March 2, 2018 at 2:19pm

Thank you both! Off to the store for castor oil, tea tree oil, coconut oil. . .I'll talk to my dr about B12. is there a shampoo you like? the texture of my hair is so weird now (kind of like fine cotton candy?) and I hate it. Do you use a conditioner?

Comment by Pascal on March 2, 2018 at 2:08pm

Thank you Halfbakedwho for your answer and great infos, the dermatologist also suggested Minoxidil and added I will have to use it for the rest of my life...implying that the ithcing will never stop which is so terrifying...sometimes it's unbearable and I can hardly function normally. I also have itchy lower legs but the doctors assume it's because of celiac disease. Halfbakedwho I'm from Croatia, Zagreb, and here it's very hard for me to find a good or better any trichologist at all. AnnieMay I understand you completely. My formula is virgin cold pressed coconut oil and tea tree oil. I put a tablespoon of coconut oil in a plastic bottle, let it warm up and become liquid then I add 7-10 drops of tea tree oil and I massage it onmy scalp. I let it sit for half an hour and wash away. The first time I did it with only coconut oil and it helped the same. I add tea tree because I feel it cleanses the scalp surface better. Also I've read about taking coconut oil internally and I will try it too, and coconut oil pulling which I began two days ago. Today I applied coconut oil on my lower legs and the itching stopped. I hope it will help you too. Another thing I'm into right now is fasting. It seems it's very good for autoimmune diseases. 

Comment by illustr8r on March 2, 2018 at 1:53pm

@AnnieMay Have you ever had your B12 levels checked? During my last big flare my family dr. checked lots of things and one of them was B12, if you are low, it contributes to itchiness and hair loss. I had 2 rounds of B12 shots and now I take 500mg of B12 daily. It helped a lot-I’m only itchy now if I overdue it with gluten/sugar/dairy.

One option to ease itchiness is to take a Benadryl or Zyrtec.

Castor oil helps control flakiness for me and soothes the weird tight feeling scalp. Others use other oils for relief too. :)

Hugs to you. I know this mess is a daily battle.

Comment by AnnieMay on March 2, 2018 at 12:07pm

Hello all- The itching and awful scalp sensations are terrible for me right now. And I'm really noticing it on the areas of my body where I'm losing hair. Even around my eyes. I know some have mentioned tea tree oil? Or coconut oil? I would love to hear your thoughts. 

Very hard to move forward with my life when this itching is driving me crazy everyday. 

Comment by Halfbakedwho on March 2, 2018 at 9:59am

Hi Pascal, are you in France maybe? One of my sons is named Pascal. It seems that you have more than just LPP FFA. So far I'm just on the regular Clobéstasol and Minoxidil. I had been going to the Clinique Saubouraud in Paris, but their hours are so complicated that I'm seeing Pierre Bouhanna next week. He has written some alopecia books, so we shall see. Thank you for the heads-up CurlyK, I didn't know that it was rare disease awareness day. 

Am going to get my hair highlighted - it's always a bit intense dealing with a new hairdresser. Since I've just moved, I've been changing people. I tell them I'm an alopecia sufferer... they say... "ohhh". Whatever that means ; )

Comment by Pascal on March 2, 2018 at 4:03am

Hi, I wanted to thank you for accepting me as a member. I suffered from rosacea and melasmas, used a lot of sublockers on my face following the dermatologist suggestion, I also have Celiac disease and Hashimoto. I have the HLA DQB1*03 gene associated with LPP; 2 days ago I received my biopsy results, LPP FFA. I was prescribed with Plaquenil which I refused because of the risk of serious eye damage, so I'm left with no therapy. Now I will try the IAT therapy suggestion: NAC+L-tyrosine+vitamin D3. Has anyone tried it maybe? I'm not use coconut oil + tea tree oil for the itching and it helps. What do you use to stop the itching?I wonder whether there is and underlying fungi or bacterial or viral infection behind FFA, or their combination. 

Comment by CurlyK on February 28, 2018 at 5:10pm

 To all of my FFA sisters, today is world rare disease awareness day. I have worn a blue ribbon for all of us who suffer with scarring alopecia. It is a strange thing that we deal with and I salute all of you brave sisters. I want you to know that you are beautiful in every way. I appreciate each one of you for sharing your anguished, fearful, frustrated, beautiful self with this community for I have been greatly encouraged through you and your stories. Hugs to all!

Comment by Halfbakedwho on February 28, 2018 at 12:17pm

Afraid don't apologize. I have had spongy scalp too - it comes and goes on the top - and where I've lost my hair it's numb. Do you have access to a good specialist near you (or not too far) who understands FFA? I myself go to Paris (I live about 2 hours from Paris) where there are several specialists. Otherwise maybe you could ask the people on the CARF site - the doctors responsible there I mean- for a telephone consult? Just throwing ideas out. Otherwise, I have found it helpful to project myself into future hairpiece and wig-land. I found it really comforting to finally meet a wig-person who wasn't fased nor freaked-out by my weird hairless pattern. 

If you are feeling seriously depressed/anxious - then see someone for that too. I am a psychologist/psychotherapist myself, and I get a LOT of personal therapy too (otherwise I couldn't do my job). Sometimes I need medicine (antidepressants) when things are hard. There is NOTHING wrong with this. Feel free to message me if you'd like. 

Gros bisous as we say here (big kisses on the cheeks).

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