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 BBQueen on March 14, 2016 at 12:41pm
I did acupuncture once. It made my hairline itch like crazy the day or two afterwards. She said that is my internal heat releasing, but I dont know about that... It felt angry!
Permalink Reply by BBQueen on March 14, 2016 at 1:10pm
I didnt want to take all these meds either but after 4 years of it not stopping, this is my last hope before i shave my head and start wearing wigs.im giving it 6 months.
Permalink Reply by Susan on March 14, 2016 at 1:21pm
For question 1. I've tried clean eating and regular with AA for the past 2.5 years and there is no significant difference for me personally. I've recently started some vitamins and that seems to make the current bout worse as if my immune system isn't suppressed enough and needs something to do like and ADHD kid. My first round of hairloss was the worst and all my spots grow back, some faster than others. Acceptance has been the best treatment for me.
Permalink Reply by Rebecca Strobel on March 23, 2016 at 9:00pm

Hi there!

I'm in Golden CO .... I have never tried any of these methods so I'm not helpful with your questions...I just wanted to reach out and tell you I'm here if you need to vent...I'm AU and 50 .... 

Permalink Reply by Kikibob on March 27, 2016 at 12:38pm

Hi Rebecca, thanks for reaching out to me.  I appreciate the support.  I'm just not sure what to do.  Lately, I've been feeling a lot of anxiety about the FFA and I'm afraid the stress is actually making it worse.  I can't even put into words today how I'm feeling... it's nice to have this group to "listen" though when I am able to...

Permalink Reply by Kikibob on March 30, 2016 at 8:28pm

I have a question for those of you using Clobetasol.  I was prescribed the foam product and the RX said to use it for 14 days.  I was getting some soreness/tenderness and dry mouth too from using it, so I stopped after day 14.  Are you using Clobetasol continuously, i.e. are you using it longer than 14 days at a stretch? 

Thanks,

-K

Permalink Reply by Robin on March 30, 2016 at 10:27pm

Hi, I use the Clobetasol topical solution that is liquid in a small squeeze bottle. I have been using it continuously once per day for 6 months now. I toyed with stopping it as I read some did not think it did anything. I just restarted as when I stopped for a very short period I lost more hair. I can not prove it was stopping the topical but it is curious. For three months I did also get injections but not any more.  Good luck!!!

Permalink Reply by MnM on March 31, 2016 at 4:42pm
Kikibob, I have been using it every other day for months and it seems to be enough to keep symptoms (itching & flaking) at bay. My derm has not expressed any concern about my long term use, though I know skin can thin from steroids. She told be the scalp is thick to begin with so not to worry.
Permalink Reply by BBQueen on March 31, 2016 at 7:03pm

I use Clobetasol liquid often. It helps me with the itch but doesn't seem to bother me in any way. However, one day I put it on when I came home from work and later opened the oven to get dinner out and it made my head start smoking. Luckily my husband was there and noticed it and was trying to put it out. lol Scary!! There was no damage done, but there could have been if he hadn't noticed. It's not flammable, but I'm just saying be careful when you first put it on.

Permalink Reply by SJC on April 26, 2016 at 10:52pm

Hi kikibob,

Hoping these answers help you in some way.  Wishing you well...

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

I've been a health nut for 20+ years.  After my FFA diagnosis in April 2015 I went on the AIP diet.  I have Hashimoto's also and hoped it would lower my very high anitbodies as a general measure of slowing down my autoimmune system.  It has made me feel very good, yet hasn't helped my FFA or lowered my antibodies.  I continue with this eating lifestyle of no processed foods, no grains, legumes, only raw dairy, limited nightshades for reasons other than autoimmune system related, such as increased energy and feeling of well being, elimination of skin conditions, mouth sores and bumps.

3) Has anyone had any good results with a course of steroids followed by tetracycline antibiotics?  I did not take these together.  

Steroids were the only thing that stopped my last super shed, which lasted 4 months and reduced the quantity of my hair by 30% (for a total of about 50% since this crap started).  I took doxycyclene as my first drug after diagnosis.  It did stop shedding, but gave me esophageal ulcers and I had to stop taking it.  I tool plaquenil next and it started my 4 month super shed.

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

I have never heard of this as an option for FFA.

 

Permalink Reply by Robin on April 26, 2016 at 11:01pm

Thank you for sharing what you have been doing. I too am on AIP for 6 months now and have Hashimotos and FFA. My FFA has not stopped but I too feel great and now want to add back some foods to widen my menu but will always eat like this......it is wonderful. i just wish I could make this hair loss stop. I am now also having a stool test to see if I have a bacteria overgrowth that could be treated. Have you done this too? Are you on finasteride? I am with the steroid topical. I do not want to take the heavy hitters.

Permalink Reply by SJC on April 26, 2016 at 11:29pm

Hi Robin,

Yes, I am on finesteride 5mg for about 5 months.  I  have stopped the super shed and am growing hair with the finesteride.  Topical steroids did little for me and thus I stopped them.  I took two varieties, first clobestasol and then another (name escapes me, sorry) cream I wore overnight in a cap and washed out each morning.  What a burden that was, with no noticeable results.    I am growing hair with finesteride.  I don't personally feel any of the drugs I took/take are heavy hitters. My stopping point would've been Cellept.  My mom was a transplant patient and I know these immune suppressors pretty well. I would've gone wig shopping instead.  

Regarding other tests, I've had a plethora of tests over the last couple of years, including stool tests for possible gut issues.  Everything has come back normal other than thyroid and hormones.  Even so, I take a probiotic for gut health, a nice organic multi vitamin and and nighttime mineral supplement.  I feel I'm so very covered between clean eating and these supplements, lol.  If I'm deficient in anything, I'd be very surprised!

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