Comment

Comment by Debs on June 22, 2013 at 3:55am

Yes, I asked Dr Harries about the effect of gluten and he said there is no evidence that it helps.... that said, if other people are having success with a gluten free diet then we have to listen to our bodies. I have not eliminated anything from my diet, I eat healthily anyway so I will carry on as usual.

Comment by PamW San Diego, CA, USA on June 21, 2013 at 9:46pm

Hi, Rita. The way I understand it is that there are many types of citracricial alopecia. citracrcial means scarring or permanent. One type is LPP and FFA is a type of LPP because the hair loss is in a distinct pattern (around the frontal hairline and eyebrows) and mostly post menopausal women. Regular LPP has many of the same symptoms, hair loss, burning itching, etc. but the hair loss is all over (crown, center). Also young people and men have LPP.

I belong to a facebook group and there are some real fanatic paleo people who insist that they are able to control the disease by eliminating sugar, dairy and gluten. The only thing left to eat are feathers! Everytime I ask the doctors, they say no definitive research to support that claim. I think Deb or Celia or one of the UK people asked Dr. Harries and he said the same thing. I never went to a naturopath, so I can't give you any advice. I also take tumeric 400 mg twice a day. Take it with my Plaquenil.

Comment by Rita - Canada on June 21, 2013 at 9:10pm

Thanks so much Judy and Debs re the Tumeric info. My dermatolgist did not do a biopsy and just told me I have FFA. I wonder why I didn't have this test. Several people mention they have Lichen Planiplaris & Cicatricial & Scarring Alopecia & can not figure out if they are all one and the same even though I've tried to pin this down on the internet. Does anyone know?
Also, I have enlisted the help of a naturpath who is adamant about the effect that a Grain Free (Paleo) diet has on any body inflammation. Even though I am willing to try anything to save my thinning hair, I am having a difficult time staying with it.

Comment by Debs on June 21, 2013 at 4:26am

MADDY, thanks so much for your post. This is the first time I have heard any doctor categorically say they have managed to stop hairloss in any patients. The fact the Dr Goh is an alopecian herself means she really understands the impact of FFA on us all.

RITA, I take turmeric extra supplements, 2 capsules a day ; turmeric 400mg. I have traweled the internet trying to find the optimium dose for taking turmeric supplements but since doctors don't prescirbe this spice you can't really get a definitive answer. There are other natural anti-inflammatories like ginger, bromelain, black pepper. The supplement I take also includes these. I guess if we take turmeric and some of these others we will cover all bases.

LACE, hello nice to see you back. How is your wig holding out? I am changing my Jon Reanu's about every 4 months but my hairdresser is great she is extending their life by cutting about half an inch off the bottom when the fibre starts to get a bit rough and the wig is good as new so I reckon I can wear one for about 6 months in the future.

Comment by Lace on June 20, 2013 at 11:06pm

Hey everyone. Sorry I've been AFK, but it's good to be back and see others' postings.

As for me, still wearing a wig full time. I'm pretty much used to it. Looking forward to going through all the posts since the last time I was here. Best to all of you!

Comment by Maddy, California, U.S. on June 20, 2013 at 6:48pm

Hi Pam, I don't have any itching and burning. I never have...I don't know why. The Clobetasol is just to try to get the inflammation down. She said Plaquenil is a possible second treatment option, but the Doxy was her first for me...again, not sure why. She did mention a couple of other drugs, including some really strong form of Propecia-like drug...but the FDA has not approved it for women or this particular condition...yet. I was not sure about the name of it. She did mention a couple of other possibilities to try if this course doesn't work....but, again, I didn't get all of the names of the drugs. She did not mention "Actos" by brand name that I recall.

Comment by PamW San Diego, CA, USA on June 20, 2013 at 6:30pm

Hi. Maddy. I am so glad things went well for you. I would like to attend one of her support groups in the future. Did she suggest Plaquenil and did she have any thoughts on the itching and burning other than clobetasol? Also, did she discuss Actos? Thanks. I know you said you want to think about other things, so I will understand if you don't respond right away.

Comment by Maddy, California, U.S. on June 20, 2013 at 5:58pm

Well, I am back from my appointment with Dr. Goh in Santa Monica and wanted to give everyone an update. First, let me just say that my experience with Dr. Goh was very good. While my diagnosis hasn't changed, she is definitely taking a more aggressive approach to treatment compared to Dr. Strict. She did a round of steroid shots all around my scalp, told me to use the Clobetasol twice a day and put me on Doxycycline (100 mg. twice a day). She sat with me and answered all of my questions, and since she has alopecia herself, can relate to the whole emotional side of this equation. I go back in 8 weeks for another round of shots and to assess the effects of treatment.

I also spoke with her about the possibility of hair transplants with this type of alopecia, and she told me that it was definitely possible. She currently has two patients, both of whom she treated for a couple of years, was able to halt the progression, and who have had hair transplants. The first one, who had her transplants about 6 years ago, had all her hair grow back in but then did have a little "flare-up" about five years later and lost some it, but it is still much better than when she first came in. The second one had it done about 5 years ago, and so far, so good...but, of course, you never know what is to come. Anyway, that at least gave me a little hope that it is a possibility somewhere down the line.

Anyway, it has been a long and emotional day and I am now at work trying to forget about it for awhile. I so appreciate this group and being able to come here and have people who can relate and understand what I am going through. Thank you for all of your encouragement too!

Comment by Judy on June 19, 2013 at 6:00pm

I am taking 2X400 tumeric.
Someone mentioned last month that she used Tryimeiclone on her
eyebrows and had good luck with them growing back, even though
they were a lighter color. Has anyone else tried Tryimeicione?
I have a prescription for it and am curious who else has tried it.
Thanks, Judy from San Diego

Comment by Rita - Canada on June 19, 2013 at 2:24pm

Celia & Debs- I have been taking 1 x 400mg of Tumeric per day, what strength are you using? It does say to take 3 @ day and I'm considering upping my daily amount. One can only hope it helps with the inflammation as it claims.

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