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 Maz on February 22, 2016 at 9:08pm

Hi Kikibob,

No answers from me. I'm interested to see what answers you do get. A question though. What about body hair? Nobody mentions that but mine gradually disappeared over many years. Arms, legs, underarms, nobody minds losing that hair, but when it comes to pubic hair it's just plain embarrassing to be balding there. 

I have the same hair loss as my daughter. I am undiagnosed but she had a biopsy and was told she has AA, FFA, Follicular Lichen Planus and Graham Little Syndrome. She has been put on Plaquenil tablets and Novasone Ointment. I am pretty darn healthy for 67 but she has auto-immune issues at 37. So, we do wonder if there is a genetic component here. It's certainly a pattern and I have a receding head of healthy hair. And there's another thing, did we all have bald fathers? Well, I did, but my daughter didn't. Then again, she's my daughter. You have to wonder, is it an inherited certainty or an inherited trait that awaits a trigger.

This is one mystery I'd rather not need to investigate but I do. We all do. 

Permalink Reply by ammie on February 23, 2016 at 8:29pm

You bring up a lot of interesting questions, Maz. 

I've lost hair on my arms and some on my legs. I don't mind that at all. Wish the hair on my head would grow back and my arm pit hair would disappear. ;)

Kikibob, sorry to hear about your diagnosis. This is a support group with a lot of good information. The disease is not very old so doctors are learning more each day. I think that's hopeful. 

Permalink Reply by MJ on February 23, 2016 at 7:02am
K-
So sorry you had to join this club. I too took tamoxifen for early stage breast cancer and attribute all my ills to it. I have been on this FFA journey for about 2.5 years now. I take plaquinal, use rogaine, and take Biotin forte and slow release iron. I strongly believe that when I followed an anti inflammatory diet and had regular acupuncture I did the best. Couldn't afford to keep up with acupuncture and a very busy life makes a strict diet difficult. But it is very hard to say if anything truly helps because we don't know what our progression would be without any attempts. Today is my 53rd birthday and Inam driving three hours to the Cleveland Clinic for my dermatologist follow up. I too am not a candidate for hormonal treatment which is the only known thing to have some benefit. I am hoping to hear some hopeful news today about new options. Wishful thinking.
MJ
Permalink Reply by Kikibob on February 23, 2016 at 10:48am

Thanks for replying Maz and MJ.  I agree that this is an awful club to have to join, but I'm glad all of you are here and I don't have to feel completely alone.

 

Maz, I do think that I've lost vellus hair on face and arms.  Still have body hair elsewhere though.  No, my father was not bald. 

 

Happy birthday, MJ and safe travels and good luck with your appointment today.  I am encouraged to know that you think the anti-inflammatory diet and acupuncture helped you, at least somewhat.  If you get new options from your derm. today, I hope to hear about those too.  The Cleveland Clinic has a great general reputation.

K. 

Permalink Reply by ammie on February 23, 2016 at 8:30pm

Let us know how the appointment goes, MJ. Wishing you the best. 

Permalink Reply by MJ on March 5, 2016 at 7:45am
My appointment was kind of uneventful. From the visual exam the doctor thought I was fairly stable with a limited amount of loss since last year. I was surprised when she mentioned hair transplant possibilities in a couple of years of stabilization. Hmmm. They reviewed my bloodwork from last time and noted that my zinc was 55, the very bottom of the range. Strange since I have been taking Biotin zinc forte for two years. I did some googling and It could be that the iron supplement that I take at the same time could be affecting absorption.

The called me to say my blood levels were good but the zinc was still just 56. The also wanted to start injections. I am trying to get a call back as I only received a voice message so that I can ask more questions. I recall reading of differing experiences on this site about injections. I don't want to end up with dents. Right now my scalp where the hair loss is is fairly normal if a little white so I don't want to make it look worse.

MJ
Permalink Reply by Lo on March 22, 2016 at 12:03pm

Hi, MJ! I'm confused...if the disease appeared stable - why do they want you to have scalp injections?  I thought those were only if the disease appeared "flared" (red follicles/scalp).  I'm very happy to hear they feel the loss has not gotten worse over the year... that is encouraging news!  Are you still able to get away with wearing your own hairstyle to hide the scarring?

Permalink Reply by MJ on May 6, 2016 at 6:34am
Lo,
I haven't pursued more questions about the injections, but I think that once they really looked at the new photos they took of me at the visit and compared them to the prior ones, I think they so more of a recession. I am really seeing it myself. The change is subtle but it is still there. I don't have rednes and itching so I think they want to inject to reduce inflammation. We are moving after 26 years in our home and I am trying to keep my stress in check. We have been fixing up the new house and are getting ready to sell our home. That on top of busyness with family activities and aging parent health issues and working full time has been very challenging. so I havent done anything about my FFA but stick with my protocal. I am still able to style my hair to hide the loss, although I feel like once we get settled I should probably make an appointment somewhere to review hair piece options. As you know, being able to conceal and having a stylish do not the same!
Permalink Reply by Lo on May 4, 2016 at 12:21pm

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Permalink Reply by Robin on March 5, 2016 at 10:29am

Hi, I want to share on your post as you are interested in addressing autoimmune conditions with diet . I have been diagnosed with FFA since September last year. I also lost my eyebrows and my hairline is creeping backward. I sooooo want this to stop. I did injections on my scalp for three months and I am on finasteride and topical steroid everyday. My dermatologist said that finasteride is the current most popular drug to try.

A year before I was diagnosed with Hashimotos, autoimmune against the thyroid. They say, if you have one autoimmune condition you have another.......so, not wanting more and now having two with the diagnosis of FFA I began a healing autoimmune diet. I am following the diet written about and recommended by Dr. Sara Ballantyne, "The Paleo Approach". Her New York Times best seller is an amazing book of science and explanations why "leaky gut" and food sensitivities are the cause of autoimmune conditions. I have been on the autoimmune protocol (AIP) for 4 months now. I have obviously lost a lot of inflammation my skin glows, people tell me I look so healthy and I feel great. It took a while to adjust to new cooking and the very restricted way of eating but the food is amazing and I love eating this way. It feels so right for me.

As for healing, the redness at my scalp has almost disappeared. I can not say it is all gone. Some times I see a little more than others.I may have lost a little more hair...it is so hard to tell exactly. But, I think I am on the right track for me and my general health. I have so much energy, no pain in my joints and I know that I am sensitive to foods that have contributed to a lifetime of inflamed conditions. I am hopeful that this is indeed helping to stop the hair loss. It will take time for my gut to heal. I understand it does take a bit longer for skin conditions to resolve.

So, I am continuing on this track. Not sure what will be helping most, the finasteride or the diet but, so long as I stop this creeping I am happy. I do now truly believe in this approach to autoimmune conditions and the more I research and hear and read stories of people who have healed themselves it is encouraging and amazing. If you are interested in an anti inflammatory diet look into Dr Sarah Ballantyne who has healed herself as well. You can find her on her web site, Paleo Mom. She is balanced, a scientist and very smart. She makes a lot of sense.

So good luck to you!

Permalink Reply by DragonandFox on March 13, 2016 at 8:47am

Hi Robin.

I've also been on Finasteride and topical steroids, (Clobetasol). Additionally, I get weekly acupuncture.  most definitely the inflammation is down because of that combo, however, the hair loss is gradually getting worse. slowly, my hairline is reducing and reducing and I feel demoralized, slowly.  My beautiful hair.  :(

My hairdresser is a friend so I feel her genuine caring compassion, but I'm not sure she is quite understanding how to deal with my need for a changing hairstyle. Well, she understands, but I'm not sure she's quite sure how to do it successfully.  when I saw her a few weeks ago she swears I have new tufts, and stated she believed the black dots in the roots was regrowth. I informed her that's not regrowth, that's a symptom actually of hair loss in FFA.

Anyway, we'll have to see what to do next time I'm in the hair chair.

In the meantime, I'm gluten intolerant and went off Gluten in the Fall of 2013 because my Dr. told me it was the cause of my 3-4 times a week migraines and daily nausea, so in theory, if it were just that, I'd be good.  I'm a pescatarian, so I eat a lot of fish, but I'm VERY interested in your thoughts and experience in the Paleo Diet and I will check it out.  I'm afraid it will be too difficult for me, but, I think I'm suffering gallstones now, so, probably the Paleo diet might be good for me!

Thanks for your post.

Permalink Reply by Robin on March 13, 2016 at 12:07pm

Thank you so much for your post.

Yes it is a very disheartening hair loss condition.......pooooo on it!!! I believe that there is now a lot of information on diet and autoimmune disease and inflammation that goes beyond gluten free. It includes further restrictions eliminating possible food offenders for sensitivity and healing the leaky gut and a concentrated effort to eat a lot of nutritive dense foods. I have found it to be a wonderful way of eating and have enjoyed the food I have been making and how I feel. I am hoping that it has slowed my hair loss. The inflammation at my scalp is so much less. It is so hard to tell sometimes. I am also on finasteride 5 mg and clobetasol. I don't think there is anything else I would be willing to try.

So the diet and nutrition part of this I do believe in and I know so much of my inflammation that I have experienced in my life is related to that. I will continue with the AIP Paleo Approach as laid out by Sarah Ballantyne. I recommend you review her book and see what you think. She is very smart and it appears that many people are getting so much help. Not sure about the alopecias. There does not seem to be a lot of those sufferers who are saying if they have actually tried it. Except for one I am following who has alopecia ariata and crohns and the AIP has helped her and her hair grew back.

We continue on.........wanting an answer........

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