Replies to This Discussion

Permalink Reply by Susanne on January 29, 2013 at 2:57pm

Hi Rebecca and thanks for the welcome - actually, I have way more energy now that I'm eating gluten-free. I'm putting more protein into my diet and am not crashing nearly as much and sleeping better. It's improved my mood rather dramatically. I teach and I definitely need energy. You may want to read about the spectrum of gluten intolerance. That being said, I've only been doing this for a relatively short time and I have no concrete proof that it's the diet that's doing the trick with the inflammation. I will say that the specialists don't love to talk about diet necessarily. Your body will not be lacking vitamins by leaving out gluten, I promise. Grass-fed beef actually has an amazing amount of nutrients. My alternative medicine provider has encouraged me to make homemade beef stock and even my husband is onto that now and says his joints are way less creaky. It's not easy eating gluten-free if you don't like to cook, but luckily I do. I'm also married to a man who makes the best bread and pizza in town. Seriously. Oh, and I love Chinese food - most soy sauce has gluten. BUT for now it's what I'm going for. You could always experiment with it. Can you see/feel the inflammation at your roots? I could see it, but last week when I went to the dermatologist, she said it's way down and she sees mostly where past inflammation has been. She gave me a few steroid injections for good measure, but said I didn't need much. I guess I'm still in my hopeful phase with this. I suspect I'll have setbacks, but I did want to share what I've done because just maybe it's a good thing. All the best to you.

Permalink Reply by Judy on January 29, 2013 at 7:48pm

Hi Susanne and welcome. It seems that I have recently started some of your
regime. I just started Tumeric but only taking 500 mg - now think I should
increase that? Actually I started it for arthritis but inflamation is
inflamation. We will see how it works. Also take Ginger and Naproxin.
So this could be the reason my inflamation wasn't as severe as some of
our other members. A few of us are taking Probiotics too.
Also, I agree about getting PLENTY of protein. My blood test shows me low
in protein so am trying to increase that. As my derm said - you need the
protein and iron to grow hair - added side effects are being less tired.
The gluten free I'm still considering (My son had Celiac beginning when he
was a baby and at that time everything had to be baked - very little to
substitute at the markets). But now there is so much available that it
shouldn't be difficult at all.
It's nice to be in that "hopeful" phase - and I hope it continues for all
of us. Judy

Permalink Reply by Susanne on January 29, 2013 at 8:19pm

Hi Judy! So nice to welcomed by so many lovely women. I'm sorry you're going through this too. I'm glad your derm talked to you about your diet. Mine certainly didn't, but a very competent, knowledgable nutritionist/acupuncturist did and I'm very grateful. I always considered myself a pretty healthy eater, but apparently I was wrong. Since following her advice I feel so much better and maybe, just maybe it'll help with the FFA. Probiotics are an interesting idea. I'll have to ask Acu-woman about it. When I first went to her several weeks ago she suggested I go gluten-free & increase my protein intake, then she stuck a bunch of needles in me and left me on the table for about an hour - the entirety of which I spent thinking about all the things I couldn't eat anymore. In a perfect world she would have me follow a paleo diet, but that is really challenging, and besides, I like my wine, which I told her. She said something about alcohol promoting "leaky gut", which is just a ridiculously horrible expression, but if you read about it, seems to be the root of all evil. In any case, I was so overwhelmed, I went to the nearest store, bought a chicken and some rice crackers, went home and smeared some brie on those rice crackers and poured myself a glass of wine. Anyway, I've done a lot of reading about all of this and am actually contemplating going full paleo in february just to see. I haven't decided yet. If you don't know paleo, it basically means no grains, no legumes, no dairy and no alcohol. Basically, no pleasure. One thing Acu-woman told me was that my idea to take turmeric was a good one, so I think we're on the right track. I wonder if the fact that your son has celiac may indicate that you're gluten-sensitive as well? Do make sure that the Turmeric you're taking is either coupled with pepper or with some sort of oil. Apparently, it makes a difference. All the best - here's hoping....

Permalink Reply by Caro UK on February 26, 2013 at 6:53am

Hello Celia and to everyone in this group. I live in the UK, near Birmingham. I'm a new member but I've been reading the posts on this forum for a few weeks whilst waiting for my biopsy results. I've gained a lot of insight into FFA and what treatments are out there from your group Celia and it's been so helpful. Just had my results yesterday and had my worst fears confirmed. I have Lichen planopilaris and it's in the active stage. I'm seeing Dr Rajpar, a Consultant Dermatologist at the Queen Elizabeth Hospital, Birmingham. I've already lost about an inch of hair from my hairline and the hair on my crown has become very thin and getting thinner. Also I've lost most of my eyebrows. This all started about 6 months ago. I had blood tests to exclude iron deficiency and underactive thyroid - results all normal. Anyway, moving on to the present, I've been prescribed Hydroxychloroquine 200mgs once a day. Also Dermovate scalp lotion once a day at night. I've very mild scalp irritation. Dr Rajpar didn't mention Doxycycline. I'm seeing him again in three months. It's good to know there are other women on here able to share their experiences and support one another. I'm devastated about what's happening to my hair and crying inside but most of my feelings I'm keeping to myself as I've found from talking to people I know that they don't take hair loss seriously unless they are experiencing it themselves.

Permalink Reply by Jules UK on February 26, 2013 at 7:55am

Hi Caro, and welcome! I'm in Bham too and saw Dr Rajpar privately initially to confirm FFA. I'm thinking of asking Dr Harries to refer me to him since we all seem to be following the same path as far as meds go.
The onset of FFA often seems to follow some period of stress; can you pinpoint anything that might have sparked it?
You'll find this forum a great source of info and ideas! X

Permalink Reply by Caro UK on February 26, 2013 at 8:36am

Hi Jules. Someone else from Birmingham! Great news! And you saw Dr Rajpar as well. That is good to know.

Thank you too Rebecca and Kath for your welcome messages. Feeling better already!

Permalink Reply by sammi on April 4, 2013 at 3:37pm

Hi Celia I have followed your posts and always enjoyed reading what you have to say I also stubbled across this site whwn I was desparate and sad. I noticed my hairline was very slightly receading in Dec 2009 when to the doctor who told me it was the menopause and tried to forget about it. Months later I noticed all the hair on my legs and arms fell out and my eyebrows were starting to fall out along with the hairline. I had had a personal shock 3 months previously and now believe this could have started it stress and inflammation are closely linked. My doctor due to body hair loss then sent me a endocrinologist who told me to go back on Hrt (patch) and see a derm Dr Harries who has been very kind and understanding although sometimes as he admits it is trail and error, I have had the shot many times but we were worried about the indentations they left sometimes months before my scalp returned to normal! Have been on hydrox for 8 months now although hairline seems stable eyebrows come and go but I'm not complaining I can fill those in.I have read with great interest about the diet etc and have recently been in Australia where I found quite a few interesting articles on FFA and inflammation , what worries me is the auto-immune label and the complications and lon-term effects if any? I asked Dr H. recently and he told me they were applying to include FFA in that catergory. Sorry to go on but I don't speak to anyone about it, I told a few friends intially but they appear to have forgotten thank goodness, you are right about keeping to close family. By the way I am a supply teacher 58 years old and live in Manchester if anyone every wants to meet up when they come to Dr Harries> I think your idea of organizing a meeting to provide support is a wonderful idea.Thanks for spending the time to read this

Permalink Reply by Chrisy, MA USA on March 14, 2013 at 12:39am

Hello! I am new to this group and I also have a similar story like most of you. I am 37 and I started loosing my eyebrows about 3 years ago. I've seen so many doctors in the first two years and nobody could give me an explanation. Recently I saw another one and she diagnosed me with FFA. I am very upset about it. I see my forehead getting bigger and bigger..... It is great to find this group. I am currently taking plaquenil 200mg twice a day. It doesn't seem to do anything. I decided to try the master cleanse for 10 days and after that go gluten free. I'll let you know if that helps at all. I also take turmeric, zinc, vitamin D3, omega 3.
I'm thinking to start looking for wigs or a hairpiece. i'm still in the early process but i prefer to be ready.
Anyways.... is 12:30am here in Boston and i'm working tomorrow. I'll visit you again tomorrow. I want to read everything on this...

Permalink Reply by Chrisy, MA USA on March 14, 2013 at 7:54am

Hi Rebecca,
Thank u for your respond. I've been taking it for a month now. What should I expect? Stop shredding? And then what? Do you stop the plaquenil or you keep taking for the rest of your life??

Permalink Reply by Debs on March 14, 2013 at 8:12am

Hi Chrissy
Welcome to the group. I started on plaquenil just a week ago. It takes up to 6 months to see an effect. I am in contact with a lady on another alopecia website here in the UK, she took it for 13 months. Her hair loss stopped. She has not had any more hair loss and she stopped taking it back in October 2012. So, in answer to your question; we don't take this drug for the rest of our lives, it is used for approx 1 year and then you can stop, if the hair loss starts up again you can then have a 2nd round of treatment.
I have lost about 1 inch from my front hairline, I found I couldn't style my hair nicely so I started wearing a wig to work in Feb, nobody has noticed and I have received just a few compliments on my new hairdo!!! I think you are very wise to start looking at your leisure for supplemental hair just in case you want to use something in the future, another option is scarves/hats.
Great to have your input. Deb xxx

Permalink Reply by Kath UK on March 14, 2013 at 6:32pm

Hello - I'm quite new to the group and I'm finding out a lot I didn't know about FFA from what people are writing here. I started losing my hair almost 10 years ago but it has progressed very slowly and I didn't even notice it at first so I didn't go to a dermatologist until I had lost almost 1 inch off my forehead (I thought it was the result of stopping HRT - how stupid was that?) I've lost over 2 inches now and I've just seen a new dermatologist who has suggested that I start taking Plaquenil. Has anyone had any side effects from it? She has also offered to send me to get a wig/hairpiece. I've no idea what that'll involve - it'll be interesting to find out what the NHS wig options are here.

Permalink Reply by Chrisy, MA USA on March 14, 2013 at 10:52pm

Deb, thank you for the info. Are you wearing a hairpiece or a full wig? How comfortable is it???

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