Success Stories?

Hello, ladies (I don't think we have any gentleman on here - but if we do, hello to you, as well!), 

I was hoping to hear back from people who have had some (or maybe a lot) of success with treatment - be that medicinal or natural - or both.  I know we are, or have been, on similar paths with this diagnosis, some taking plaquenil, others taking antibiotics, some doing shots, others doing topical, etc.  Has anybody been on treatment for 6 or more months, and had a slow down of hair loss?  My dermatologist is always so positive - telling me that he has absolutely seen success with these treatments (halting/slowing down hair loss, and alleviating symptoms).  I walk out of there kind of inspired, and then after a bit, feel a bit discouraged.  So maybe we could all respond with:

  • Outcome of our treatments thus far (and what treatments they've been)
  • How much hair loss you've experienced, and in what timeframe?
  • Are you still able to "wear" your own hair, and mask the loss?  If yes, any tips on hairstyles? (Ellen had a good tip for us!)

I will share mine, and pray that we can get others to share:

  • On plaquenil, shots, and finasteride for 2 months since diagnosis.  Too early to tell if any of it is working. I eat very healthy (always did, but even more so now).  I swear I eat a pound of blueberries a week.  
  • I have lost about 1.5 inches above my ears, and about 1 inch at temples - and this took about 4 years.  I have recently started to recede at my hairline/forehead - that is back about 1 or 2 centimeters.  I was told 4 years ago it was AA - and was not offered treatment.  It wasn't until January of this year that I asked if my hair was ever coming back that my derm decided to do a biopsy.  The rest is history.  :-)
  • I am still able to "wear" my hair (shorter bob-style), but recently got heavier bangs cut in... and was also fitted for two small hair pieces that cover the bald areas at my ears.  They are glued in and actually stay put for a good 2 weeks (washing hair and all).  I like this option... but when I take them out, I am still, for now, able to hide the loss until the wind blows.  I am a bit worried about the front hairline - not sure if they can do a custom piece for that - time will tell. I pray the medicine works in the meantime.  And my healthy lifestyle. 

I will share a picture of me, and my family with all of you.  This was taken in March.  They really are the blessing and light in my life... and where I try to keep my focus daily.  Blessings to all of you. 

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Permalink Reply by Nancy79 on April 21, 2015 at 11:22pm

Hi All,

I had a dime size bald spot in the middle of my hairline since 1998 and didn't think too much of it. Then in Jan 2013 my head became very itchy to extreme and I looked closely in a mirror. I saw redness around the follicles and noticed that the hair on my right side of the forehead was also thinning 1/2 inch back. I was just leaving on a long trip but decided I needed to get to a doctor as soon as I got back.

I was put in Clobetasol with disasterous results. My follicles became pus filled. Then I was put on clindamycin cream to counteract the reaction. I then had a worse reaction with my scalp so red I thought it was bleeding. The pain was horrible. Then my whole face turned red and all my face and scalp skin peeled off.

I went to the local medical university to do my own research and found that clobetasol was of no benefit. In fact, I read that when your follicles get that inflamed the hair is going to fall out. And that is exactly what happened on the right side of my forehead. I read the best results to slow it down or stabilize it was Dutasteride 0.5mg daily. Research studies said it was 50-60% effective with little side effects for women. Men have sexual impairment side effects. I got on it immediately and saw some regrowth although it was so fine it was not significant. I did feel I was experiencing excessive shedding of hair all over the head and my hairdresser would comment there was excessive hair in the drain when she washed my hair. This excessive shedding all stopped within two weeks on the Dutasteride. The rest of my hair continues to get more full and my hairdresser comments I no longer have excessive hair in the drain. I had noticed it was taking less and less time to dry my hair before getting on the Dutasteride. I have been on it a year. My hair is full and bushy. The hairline has lost a pencil eraser spot toward the left side of the forehead. The original bald spot in the middle of the forehead is now quarter size. I have had no side effects with the Dutasteride.

I also came across information about a narrow band UVB light brush that had been used on FFA in a couple of people. It took away the itching and redness within two weeks of using it and did regrow hair.  The itching and redness did go away for me but no hair regrowth. I hesitate to mention it because it is an expensive piece of medical equipment. Others have noted they reduced these symptoms with much less expensive treatments.

My disease is progressing slowly but it is progressing. I was formally confirmed with a positive FFA biopsy in March 2015 on the left side of the forehead hairline. I have hyperkeratosis of the follicles and I cannot tell how far back the hair is involved with FFA.

I have only found one Dermatologist that treats this in my area, She wanted to immediately start  Kenalog shots. I am willing to try anything that doesn't have real bad side effects. I do not want to thin my skin so blue veins show up or get dents in my forehead. I am really on the fence. I did start on Doxycycline 50mg 6 weeks ago instead of the shots. Not seen any changes. I have read in the research that the shots are most effective if you are in the initial highly acute phase of the disease (30-40% effective in slowing and stabilization). They probably could have been most effective for me in Jan 2013 when my follicles were red and my scalp was so itchy I could hardly stand it. If anyone has any great success stories or downsides of these shots I would love to hear it.

I do also eat very healthy non inflammatory diet. I did cut out coconut oil and palm oil as I read these lead to the development of DHT which clogs the follicles. The action of Dutasteride is to block the development of DHT. Oddly, I started back on the coconut oil for a short while and noticed the new pencil size bald spot. I immediately got off of it again but it could have been a coincidence. I try to reduce stress with exercising and other methods. My major flare up in Jan 2013 coincided with the closing of our 56 year old family business due to the economy.

That's my story so far. Thanks for listening.

Nancy

 

Permalink Reply by Cheryl on April 23, 2015 at 10:42pm
Hi everyone,
My name is Cheryl and I was diagnosed July 2014 with FFA. It has been quite a shock, and I am so glad to find this blog. I am having some success just recently. I take Plaquenil, take injections every 6 weeks (ouch!) and take finasteride(last 3 months). I had an appointment today and I am having some little hairs grow back. it is not a lot, but is encouraging. The Doctor I go to here has over 100 patients with FFA. I am also part of the research thru Duke University. I feel that we can all learn from each other, and this blog has really helped me to cope.
Permalink Reply by Lo on April 24, 2015 at 2:41pm

Hi, Sandy!  You are on the exact same treatment plan as me - and I am guessing a number of women on this site (although I did notice that some are taking finasteride, others are not... I am). It is nice to hear that you are seeing some success with treatment - that I am guessing, other than the finasteride (which you said you have been taking for 3 months), that you have been on the other treatments for about 10 months since diagnosis?  My question is - are the treatments slowing or halting the hair loss?  You mentioned you have baby hairs growing (which is great - that may be a result of the finasteride)... but you didn't mention if it was slowing the actual rate of loss.  Curious about that... and if you are still able to wear your own hair.   I am glad to hear about the Duke research... that is fantastic.  And you're right about this site... it is a safe place to discuss successes, fears, uncertainties, etc.  Glad you are on.  

Permalink Reply by Cheryl on April 24, 2015 at 4:21pm
Hi Lo
I am still able to wear my own hair, and it is really not noticeable unless I pull my hair back or the wind blows, then you can really tell. I do not feel like I have lost any more hair on my head, but have noticed less eyelashes,and eye brows on my left side. I did not notice any new hair until I started on the finasteride 3 months ago. I have noticed a side effect with it though. I can get depressed at times. I am usually a very positive upbeat person, so this is something I can I just have to be aware of. The most annoying things I have noticed are my cheeks turn bright red if nervous, or sometimes for no reason, and the back of my head if I lean against a pillow sitting up feels prickly. So weird, have you noticed any of this symptoms. I am 60 and started losing my hair 3 years ago, but was told it was a menopausal symptom. I was finally diagnosed last summer after I had lost a lot of hair on both temple areas.
Permalink Reply by sallylwess on April 24, 2015 at 4:49pm

Thanks for telling us about the side effects. I always worry about those. 

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