Replies to This Discussion

Permalink Reply by Debs on April 10, 2015 at 8:30am

Hi Sandy, the rate of hair loss varies from person to person. I think mine was faster at the beginning though (Dec 2011) so what you are describing does sound similar to mine. I have not heard of black colouration at the area of hair loss. I suggest you ask a derm to look at your scalp with a magnifying glass to see what that is.

The steriod lotion you are using is to calm down redness/itching, it does not stop hair loss in FFA. Some derms prescribe this thinking it will stop hair loss, it does not.

Sorry to hear of your diagnosis, it is a huge shock I know but things do get back to normal.

Permalink Reply by SandyA on April 10, 2015 at 6:18pm

Thanks for sharing your experience, Debs. (and thanks for the info sheet! It has incredibly helpful info.) That's exactly what I was hoping for.

Now that I think of it, I probably should have written my question about the rate of hair loss more in terms of others personal experience instead of a general "what is usual?".  I am in the process of determining what course of action to take and, if the FFA is rapidly progressing, it may further influence my decision to take an oral medication only because I am battling other undiagnosed symptoms that are now my primarily concern and "may" be treated incidentally with the oral meds for the FFA. (it's a rather complicated story). I do not feel comfortable taking any medications (even tylenol/ibuprofen) unless absolutely necessary and am certain that the benefits will far outweigh the risks...so the decision will not come easily for me. 

I am hoping that my dermatologist didn't prescribe the foam thinking it would stop the hairloss. Actually, I have made the decision to stop using steroid topicals, now that I've had time to look into them, since I fortunately do not have any notable itching of my scalp. In the short amount of time using that foam, I've noticed my skin becoming noticably thinner and losing even more elasticity than I had (which is not much lately). Steroids, even topical, really scare the crap out me.  It sounds like others are having success with the pimecrolimus/tacrolimus on their eyebrows (I was also prescribed)....so I'm more tempted to continue with that.

 

Permalink Reply by Molly on April 10, 2015 at 11:39am

Hi, Sandy, Your story is somewhat similar to mine. I was diagnosed in November with FFA after seeing a dermatologist for a rash on my face. I hadn't even noticed the hair loss except in retrospect. I knew I couldn't get my bangs to lay right and attributed it to hormones, age, etc. I'm still more upset about my face because the "rash" has made me look much older. My dermatologist said the same process that is effecting my hair is also effecting my face, so the rash is actually scarring.

I'm not sure about the color of my hair follicles, but I do know they look different, and when I had my hair colored, the color seems to concentrate around the follicle for much longer than my actual skin. Yes, I know, I probably shouldn't color my hair, but, at this point, I'm not ready to have my face and my hair look ten years older.

I agree that reading this board has helped realize I'm not alone, and I'm hoping to find some info that will be helpful in dealing with this.

Permalink Reply by SandyA on April 10, 2015 at 7:24pm

Hi Molly,

I was reading the thread about the skin problems and was very interested in your reply and wanted to ask you more about your rash. I think I'll reply to you about the rash over on that thread to keep the skin info together.

I think my face/neck rash and the FFA are related too, but that's only my opinion...my doctors do not think so. I am strongly suspecting my immune system is completely out of whack and reacting to something (to what is my current quest). In just a couple months time, I had so many different symptoms appear out of the blue but at the time, like you, I easily explained to old age, reaction to a face product, hormones from perimenopause, stress from raising 4 teenagers at a time, etc. Only in hindsight, am I now beginning to very strongly believe that all the symptoms ARE related (even the non-dermatological ones) Unfortunately, none of my doctors want to approach all the symptoms in a holistic manner, although it's a bit understandable since the other symptoms do not fall under dermatology. 

Is your doctor still trying to find out the cause of the inflammation of your face or just trying to resolve the symptoms? When you mentioned that your derm. said your rash is scarring, is it scarring similar to the FFA (the smooth pale band of skin)? 

Permalink Reply by Alice on April 12, 2015 at 4:00pm

What kind neck rash fo you have? About the time I noticed my hair loss, I got a very sensitive and itchy neck rash that looked like someone tried to strangle me with a rope. I have some cream for it but it comes and goes.

Permalink Reply by SandyA on April 13, 2015 at 9:19pm

Hi Alice,

I've been reading thru the threads and am astonished the number of people who are having skin issues and rashes in addition to the hair loss. I've never had any skin sensitivity issues until all these symptoms manifested last year so find it very fascinating that there are many here battling skin problems as well.

My neck rash first appeared brownish in color (last Feb.) with absolutely no itching. Since last Fall, in addition to the hyperpigmentation (which seems to be permanent), a large portion of my neck (my right side seems esp. sensitive) flares up to a bright red color every once in awhile (about 2 or 3 times/week) and gets incredibly itchy, with raised bumpy areas. Like you, it comes and goes---sometimes after applying any product (when it is left extremely dry after a flare up), usually for no discernible reason whatsover.

I hope this is not a TMI moment but thought a picture is worth a thousand words. This is taken right now, and believe it or not, this is a non flare up day. You can see the brown hyperpigmentation on the edge. Does this look like yours?

Hope you are getting some relief from your cream.

Permalink Reply by Alice on April 14, 2015 at 8:16am

SandyA, when not flaring, my neck has a thin, dark line going from side to side. When it flares, the line gets thicker, redder, scaly and very itchy. At times, the skin on my face and neck become very sensitive, so that my usual retinol cream stings and burns. Like you, I've never had sensitive skin or rashes before al this FFA stuff started happening. Sounds like we are experiencing the same thing,  but mine is milder

Permalink Reply by Chris on May 28, 2015 at 7:58pm

I get rashes and allergic reactions all the time. I am also asthmatic. I think all of these pieces tie together somehow with autoimmune diseases, I just don't know how...

Permalink Reply by Pams on April 11, 2015 at 5:41am

Hi Molly.....so sorry to hear of your diagnosis....I too was diagnosed with FFA in December.  I was having melanoma removed (my 3rd one in just over a year) when I showed my Derm my hair.  She knew immediately what it was & confirmed by biopsy .

I colour my hair also & was prepared to let it go grey...but my derm assured me it would make no difference & to keep doing it.    My hairdresser agreed.....the colour  makes me feel better & dark hair is less see through than grey.....disguising my hair loss.  I have very curley hair which also helps.

Permalink Reply by DragonandFox on May 4, 2015 at 8:20am

Hi Sandy,

I actually noticed my roots looked black over a year prior to getting my diagnosis, but thought even though I have dark blonde to light brown roots and at the time I was not going "blonde" in the salon, it had something to do with dying my hair.

I neglected seeing my Derm due to stressful events that took priority at the time and it wasn't until the shite hit the fan that my hairline was visibly reduced by 1/4 inch, I had 2 completely bald spots at my temples and the redness around my roots got really bad when I got an emergency appointment and shortly thereafter was confirmed with a biopsy.  All that stuff became significantly noticeable with weeks of a tragic death.  I know grief and stress is the cause of everything bad and I've been into the body and health and how food and life effects us, but I was astonished how quickly the effects of the ultimate stress on my system wreaked such havoc.

I started the steroid shots right away in Feb 2015 and along with my monthly shots that hurt like hell when injected in the hair line (top of head is piece of cake), I apply the Clobetasol foam into the scalp and cream on the hair line to stop the foam from running onto my face.

I spoke to my traditional and kind Mt Sinai Cancer specialist (and plastic surgeon) in NYC who I've been seeing since 2008 about acupuncture and though he knows I'm into holistic, he admits he knows little about it, EXCEPT, he told me to "absolutely do it" because the Dermatology Medical Journal at the time had JUST come out with a report that said Acupuncture significantly helped to improve people suffering Alopecia Areata.  He also told me there have not been studies done for FFA because there's no money in this seeing it's one the most rare forms of Aolpecia. (Yay for us!)

The Dr says he's feeling positive about this treatment but it takes time.

So, The acupuncturists have most definitely helped with improving some issues.  For one, I almost never get red faced any more which has to do with internal inflammation.

With FFA, there's internal inflammation (as there is with every disease) and the immune system sees the hair follicles as enemies. The trick is to get the immune system to chill out and work the way it's supposed to instead of technically betraying it's own host (our bodies).

At 1st the acupuncturists focused a lot on needling my hair (which does not hurt), but then they started focusing on my stress related issues that have wreaked physical and emotional havoc resulting in this AID (how do you like that?  FFA is an AutoImmuneDisease = AID) *sigh*

Additionally in reference to discussions & disclosures here, I also have experienced the odd neck rash that roots home in a horizontal crease on the left side of my neck. Turns out I have sensitivities to certain lotions and the allergy test confirms I'm allergic to neosporin.  OK..(??) ... so most treatments were making my neck worse.  I use a homeopathic ointment now on things like that & scrapes and cuts and it works fine.

I have some baby hair regrowth on my temples and it seems the hair line may be getting better in some places and worse in others.  I have 2 new cowlicks, one on my right hair line the other my left back top of head, this means there's a reduction in hair there, yet the hair below the typical area's that FFA effects, the male pattern baldness, is thick as it ever was. I have had super thick hair my whole 50 years of life.

Doc started me on Prednisone (for 8 days) to see if it will give a boost to the treatment. I see the acupuncturists every week and only once stopped the Clobetasol but that did not fair well AT ALL for me, My scalp started to hurt like hell from inflammation.  I have no idea after 4 days if the Prednisone is working for the FFA, but it's most definitely not fairing well on my GI.

 I think I have to cancel a business trip for Friday which is not a good thing because of this too.

Permalink Reply by SandyA on May 6, 2015 at 3:27pm

Thanks so much for sharing your story, D&F. Your cancer doc sounds absolutely fantastic! I just don't get the sense that alternative medicine is embraced much by those practicing conventional medicine and to hear that your doc is so supportive of acupuncture is encouraging. It also sounds like the acupuncture is helping you.

From reading all the stories on this board, it seems that so many have had a stress-related event that triggered the FFA. I am no different --- my FFA symptoms started in the same month the family was undergoing multiple life changing events and an extremely stressful time (loss of income with husband's hospitalization and quickly declining health and my own job being lost the month prior when owner shut down business.).

I hope you find success with the treatment. Please keep us posted on your progress. I have decided to forego medications for now b/c I have recently found that some of my other symptoms are directly related to food so am on an elimination diet to see if it resolves everything--including the dermatological issues like the skin bumps and rashes (and daresay the FFA??? probably a long shot). But I would not hesitate to try acupuncture if it may help.

Best wishes!

Permalink Reply by MJ on May 8, 2015 at 6:07am

I have been getting acupuncture on and off for the past year. I attribute that to the slow down in progression. I get needles in my head but the main focus is to work on my immune system and overall kidney function. Last year I went three times per week to start, then weekely but had to stop due to yhe cost. I have been going again weekly for the past several months but again will have to stop at least for the summer. It is so expensive and i drive quite a way every Saturday morning. My dr.is a fifth generation Chinese med doctor. I truly believe in the benefit of acupuncture. MJ

• ‹ Previous
• 1
• 2
• Next ›
• Page