Newly diagnosed in Colorado

Hello.  I've been reading this discussion board for a week, since I was diagnosed with FFA on Feb. 12th.  I'm 54 years old and lost my eyebrows probably 3 years ago which, at the time, I attributed to a side effect of 5 years on Tomoxifen.  I've adjusted to that and don't care much about my eyebrows now.  However, I noticed a few weeks ago that my hairline had started to recede and I already had a skin screening appointment scheduled with a dermatologist.  The minute he pulled my hair back he could see the hair loss. I mentioned my eyebrow loss, he looked closer and said my pattern was classic frontal fibrosing alopecia.  He told me a bit about it and recommended I go do some research on it.  He said the hair loss I've already suffered is irreversible, there are some treatments that work for some people, including some medications used to treat prostate conditions, but there is no known cure.  I asked if it would get worse, and he said it likely could.  Lovely.  He told me to contact him, if I decided I wanted to "try" something.

 

I've been doing lots of online research and have read what I can in old posts here.  Since I had very early stage breast cancer and a family history of the same, I am not interested in hormone therapies.  I've read FFA is an auto-immune condition, but I've also read that the hair follicle becomes inflamed, dies and the scar tissue prevents regrowth.

Here are my questions for you all:

1) Has anyone had any good results changing to an anti-inflammatory diet (like Dr. Andrew Weil's)?

2) Has anyone had any good results with acupuncture?

3) Has anyone had any good results with a course of steroids followed by tetracycline antibiotics?

4) Has anyone tried Serrapeptase - an enzyme which is supposed to dissolve "hard" tissues, like scar tissue?  If so, any positive effect?

 

I've read that many people have inflammation basically out of control in their bodies, so my mind is wondering "is inflammation the culprit here?" and will reducing it help?

 

Thanks in advance for sharing your knowledge and any experiences that might be helpful with the above.

 

K

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Replies to This Discussion

Permalink Reply by Robin on April 30, 2016 at 12:02pm

I have a question of "burn out"....how or when does this happen? I don't know much about this. Is it different for everyone? How long do most people have an active FFA? Would like a rapid burn out!!!!

Permalink Reply by Robin on April 27, 2016 at 9:35am

SJC, one other thing we have in common is transplant. I have a daughter who has had a lung transplant so I too am very aware of celcept and other immuno suppressants. I don't think it is worth loosing my hair to gain a serious infection or kidney damage or what ever else......hoping to find a natural healing.....also hoping the finasteride will at least slow the process.

Permalink Reply by BBQueen on April 27, 2016 at 11:56am
HiRobin, Did you have the super shed when you started Finastride or was that before? Are you having alot of regrowth or just a hair or two popping up? Ive been on finastride and plaqunil for two months. Ive done the steriod shots 3 times but Im wondering if it only aggravates it more.Thanks for your info.
Permalink Reply by Robin on April 27, 2016 at 3:22pm

Hi, I had lost above my ears and around the top forehead when I was diagnosed in October last year. I have been on finasteride since then and I have lost more hair. I had a recent flare and don't know why. I have not had any grow back......that would be nice......I continue to eat an AIP diet and will continue the finasteride and clobestol daily. y Dr only let me do the shots three times.......he said if it was going to work that was enough.

Permalink Reply by BBQueen on April 27, 2016 at 4:32pm
Sorry, I meant this question for SJC. She meationed regrowth.
Permalink Reply by SJC on April 30, 2016 at 12:40am
Bbq,

My second and most recent super shed started right after beginning plaquenil, strangely enough. It is a side effect of the drug that isn't seen too often. Obviously it wasn't the right drug for me yet it is for many others. I have good, solid hair regrowth at my part, corners of my forehead and over one ear. Maybe some at the nape too. It is about 2 inches long and dense. I'm really pleased. For a short time I was like alfalpha from the little rascals- it stuck straight up, but no complaints from me.
Permalink Reply by BBQueen on April 30, 2016 at 9:51am
SCJ, I think that is Great news! Thank you for replying to my question.
Permalink Reply by Robin on April 30, 2016 at 12:06pm

Bbq, what do you think your regrowth is due to?

Permalink Reply by BBQueen on April 30, 2016 at 6:50pm
I haven't had any other than 2 or 3 hairs, but its only been two months since I started the med's. I feel like I have some hope. Being on both Fin and Plaq I feel like its just got to stop it. I really hope in a couple of years I can get a transplant. My hair has gone back 1.5 inch. I dont look at peoples faces any more; I look at their hair lines. Lol :(
Permalink Reply by BBQueen on April 30, 2016 at 6:56pm
Also, when my hairs use to fall out Id see the white follical stuck to the end of the hair but Im not seeing that anymore. Which Im taking as a good sign. But Im still losing them.
Permalink Reply by julie on March 18, 2019 at 12:01pm

Hi Robin,

I'm also interested in the therapeutic dietary approach. Are you still on AIP? How's it going?? And what was the outcome of the stool test?

I just did this testing and discovered that I have intestinal yeast overgrowth and high markers for gluten sensitivity (presumably a result of leaky gut caused by the yeast overgrowth). So I've started an anti-candida regimen to clear up the yeast overgrowth, to be followed by AIP or something like it (perhaps the Wahl's Protocol). So I'm curious to hear what happened with you!

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