Replies to This Discussion

Permalink Reply by cubbieblue on June 3, 2014 at 11:49pm

Hi Sandy.  Thanks for sharing your story and for the helpful links and tips. I had to chuckle when you mention the wind giving away your secret.  Living in the "Windy City" myself, I know exactly what you are talking about!  On a windy day I find myself looking at people approaching me to see if they are looking up at my forehead.  I used to love breezy days, but now I am constantly checking the placement of my hair to make sure the wind has not been unkind.  Your positive attitude about the wigs is inspiring.  Right now I am still able to style to cover, for the most part, but the possibility of wigs in the future doesn't seem quite as scary now.  I'm nervous about taking a bunch of drugs too.  The dermatologist admitted that notwithstanding the studies showing moderate success rates with these drugs, she couldn't rule out that the FFA hadn't just burned itself out in those patients.

Permalink Reply by Classical Anne in NC mountains on June 2, 2014 at 6:19pm

Welcome, Cubbieblue, to the club you never wanted to join!  But it turns out simply having FFA puts you in touch with some pretty amazing women online.  Just sorry to pay the dues in hair loss.

I think a lot of your story is the same for many of us.  Particularly, chalking up unexpected changes to menopause or just plain aging.  Aside from the symptoms directly related to visible hair loss, you mention the increased sweating with exertion.  I am 20 years postmenopausal [no, I'm not yet actually ancient -- just had a too early menopause] so became quite frustrated when I noticed the increase in sweating with exercise and activity in recent years.  I think now it is quite possible it's related to the FFA, or perhaps more accurately, to the autoimmune struggle.

I think there's little doubt that stress triggers this or any autoimmune response, and you apparently had a load of it at once!

Your expression of a  tingling/sizzling/itching/pulling/tightening sensation describes it perfectly for me.  There seem to be a whole host of reasons why this may vary from day to day, and from patient to patient, the more you read thru the comments of the ladies on this site.  The good news is that, together, we are coming up with more possible answers and practical solutions than any of our MDs did individually.  It's really a great group of women, and I hope you enjoy conversation and comfort from them as much as I have.

Best wishes -- I love your name!

Anne

Permalink Reply by Classical Anne in NC mountains on June 3, 2014 at 11:45am

I meant to suggest that any NSAID, like your ibuprofen, or pain reliever such as acetaminophen will cause ringing in the ears.  Might it also be a mild side effect of your Atenolol?  I take enough medications that my ringing drowns out the crickets.

And one other parallel to your comments: yes, I suddenly gained a significant amount of weight in a relatively short period, around the time the FFA became most active.  From August 2012 until now, I have gained over 35 pounds.

As far as medications suggested for dealing with FFA, it is apparently true that nothing will stop or reverse it.  The only hope is to slow its progress.  With my complicated medical history I chose to reject postponing the inevitable, aside from the non-systemic steroid scalp injections, which I DO believe are working for me.

Permalink Reply by cubbieblue on June 4, 2014 at 12:20am

Hi Classical Anne.  Thanks for responding and for making me laugh!  :You make a good observation about the medications and the ringing in the ears.   The sweating is particularly frustrating because sweaty hair undermines all my careful hair placement.

I think it is wonderful that there is open discussion so we can compare our stories  I forgot to mention that during the time since I first noticed symptoms, I kept having fluctuating thyroid levels -- one test would be normal, the next one not, and then normal again!  We never did figure that whole thing out.

I admire your acceptance of the inevitable.  There must be a certain amount of relief in that.  I don't really know anything about the non-systemic steroid scalp injections, but I'm glad they are working for you.

And yeah, about my name...that in and of itself probably is contributing to my stress and hair loss. ;-)

Permalink Reply by Classical Anne in NC mountains on June 4, 2014 at 2:28pm

Glad we can make each other smile!  About the thyroid, like many other ladies, I have Hashimoto's autoimmune hypothyroid and have been on thyroid meds for about 15 years.  But when the FFA ramped up, my thyroid took another dive and had to increase my dosage.  I suppose the common link is not necessarily the thyroid itself [one of our most helpful contributors actually had thyroid cancer, and had her thyroid removed about 4 years before FFA]  but the fact of our autoimmune deficiencies.  Few [if any?] of us have only the one autoimmune disease.  You'd think I actually like them, because I've been collecting them like baseball cards!  [speaking of which, all due respect to your beloved Cubs, but I'm a Sox fan myself -- but Red, not white!]

You might want to inquire about the steroid injections.  Many on this site have commented one way or the other.  But it seems they all are/were trying several other meds & treatments at the same time, so very hard to determine what's effective.  As I said, because of my complex medical history -- and the understanding that no one has yet been able to stop, let alone reverse, the progression -- I chose not to add any other chemicals to the pharmaceutical soup in my GI and bloodstream.  But the superficial corticosteroid scalp injections have no systemic effect.  My only goal has been to slow the ebbing tide of my receding hairline.  Like any ending relationship -- this one, with my hair -- I want to be let down easy, please. 

And it absolutely MUST be working.  I have had the full blown scalp involvement [red, inflamed follicles and nasty itching] for well over a year.  But I have never lost more than a few hairs a day, even with shampooing.  The injections relieve both the visible inflammation and the itching, and I can always tell when I'm due for another round.  The only side effect that others find troubling is a sort of indented furrow on the forehead which can result from a poorly placed injection [they need to be within the affected area, not on the edge of the hairline or on the balding area].  Some may have several "dents", but they disappear when treatment ends [presumably because the FFA has burnt itself out].  I have one visible furrow, about 1/8 inch wide and 1 inch long, at a diagonal where my Widow's Peak used to be.  I can easily feel it with my fingers, but I doubt anyone would see it, even if I pulled my hair back -- and why would I do that?!  I've lost about 3/4 inch across the forehead, but barely 1/4 of it since beginning treatment 10 months ago.  I get 20 - 30 injections every 6 - 8 weeks; and, honestly, it hurts no more than pricking your scalp with a sharp comb.  Though occasionally an injection has gone into a particularly inflamed follicle, and that does sting for about 20 minutes, but totally bearable in the grand scheme of things.

Well, as always, I've said more than enough.  I think it's because my sweet husband hardly talks at all, and I overcompensate.

I wish you all the best with your FFA journey,

Anne

Permalink Reply by Sad in chicago on September 10, 2014 at 6:20pm

Hello.  Yes, many of the same symptoms.  I was first diagnosed with female pattern baldness by a very fancy derm here in the Chicago area who did a scalp biopsy.  It was early in the game and although my forehead was beginning to become apparent the hair around my temples and ears had not gone yet.  But I did mention arm, leg, and eyebrow hair loss as well as face fuzz.  She gave me rogaine and propecia....none worked.  Finally I was at another dermatologist for something else about a year later and was complaining and now everything was very apparant and she diagnosed FFA and gave me the bad news that nothing would work.  After research on the internet, I did come to understand it is autoimmune, but I am not sure what to do about that.  I am now trying a sugar free antiimflammatory diet, but as far as i am concerned this is just bad luck of the draw.  yes, post menopausal, yes, always perspired from my head and neck a lot, yes, a cancer survivor, yes, slight thryroid disease with synthroid, but had that checked and it is not the medication.  No tingling, no ear ringing, and I think my scalp used to itch, but not anymore. I did have some serious stress with my job about four years ago which is when I think this began, but in reality, who doesn't have stress anyway?  Why should that be a reason for this crazy condition.   Been dealing with it, whether I knew it or not, for about four years now.  Did get a clip in wiglet to cover this last January and wear it everyday.  Thank God I can afford it.  

As far as the drinking goes.....screw it!  A glass of wine or a drink on weekends is a necessary evil and something I refuse to give up.  

Most days I am OK....summer is hard when I cannot wear the wiglet like to the pool or when I wake up and look at myself.  I know there are worse things and I try to just get on with it and keep myself looking like me as much as I can.  As they say, it is what it is.  Just one more thing I never thought I would deal with.  My 91 year old Mother has very thin hair all over her head, but does not look as wierd as i do!  Oh well.  

Glad we found this site to share.  Thanks for listening....

Permalink Reply by cubbieblue on September 12, 2014 at 2:45pm

Hello Sad, my fellow Windy City sufferer,

Thanks for sharing your story.  You mentioned seeing two different dermatologists and referred to both as "she," so I would not be surprised if one of them is the doctor I am seeing at NMH.  We are early in my treatment (diagnosed 5 months ago) and so far I am only willing to try topicals.  It's extremely difficult for me in the summer with the sweating, and windy days (like Wednesday was) are the worst!  

I haven't heard anything that makes me believe that drinking causes or worsens FFA in any way, and I actually read an article which said moderate alcohol consumption helps to lower levels of C-reactive protein, and for that reason it may be an effective way to reduce inflammation.  So enjoy that cocktail and have a great weekend!

cubbieblue

Permalink Reply by Sad in chicago on September 30, 2014 at 5:00pm

Hello.  No, the dermatologist who did the scalp biopsy and only diagnosed as female pattern baldness is at Rush U.  The dermatologist who actually diagnosed was working with me on some skin stuff and when I started complaining about my eyebrows, and hair, she took a better look and she is the one who discovered the FFA.  She is also the one who said she thought no cure in sight.  So yes, cocktails are in order!  Also, I love sugar, but have been trying hard to cut down.  I don't think I could ever lose it altogether, but working on more veggies and fruit which is known to be anti inflammatory as well.  Thanks!

Permalink Reply by ChrisC. Chicago, IL on September 17, 2014 at 7:30am

Hey to a Chicago connection—

Hellow "cubbieblue" and "sad in chicago"—I don't check in often with the FFA site anymore but did a quick scan this morning before work and was surprised to find that with this "rare" condition that there is a home town connection. I found this site almost 2 years ago right after I was diagnosed in November of 2011. I have read the description of the events leading up to diagnosis from so many members on this site, and changes in body chemistry whether menopause or stress seem to be triggers for this ramped up immune response the claims our hair.

I was in deep mourning for the first year and convinced I'd be in needing drastic measure to cover up by hairline by now. I consulted with 3 different wig specialists preparing myself for the inevitable. . . while I am still able to cover it up, I know I will probably need to get some sort of "help" at some point.

I had been complaining about my eyebrows starting to disappear on the right side and then slowly on the left probably a full year and a half before diagnosis! But since I had a hysterectomy 10 years earlier when I was 46, I thought as you all did that it was menopause related. Also that the thinning at the temples were just another menopause related symptom. Had spoken with my women's doc about it but not my dermatologist. I had a minor melanoma removed and finally got a biopsy when my dermatologist took a closer look—FFA!!

Yes I had some major stress two years previous when this whole thing took off! My Dad was diagnosed with stage 4 melanoma with a bad prognosis and I had some crazy work stress. I can almost remember the time I was pacing and felt something "snap". A heat and a buzzing that things were not right in the universe. So on that we agree as well.

So sorry that you all are in this with me but this is a great source of inspiration and information. I am on clobetesol, Plaquenil and minocycline with Rogaine. I have been on finestride which really did nothing. I also get injections periodically to relieve symptoms. I will check in again soon. . . I have to run.

Permalink Reply by Jen on September 30, 2014 at 12:33pm

Cubbieblue,

My FFA started being noticeable when I was 52. I have no hair on my arms and sparsely any on my legs. I eyebrows are very thin and completely missing in the middle. I have lost 1 inch at the forehead and more along the temples. I have lost about 2 inches above the ears. Ay 53, I noticed that I was getting some itchy spots around jawline and neck are. Whenever I scratched (I really had to), I was left with dark areas which did not go away for 3 years. At that time, my husband was diagnosed with cancer and while he was in hospital, this itching started. It was in July and I noticed that the next summer I was having the same problem. I have come to realize that even 5 mins of sunshine causes problems for my skin. I can feel the sun burning my skin as soon as I go out so now I have to be fully covered. I have always had eczema flare up in the winters. So all year I have skin issues. 

Permalink Reply by Root Beer on October 22, 2014 at 3:01pm

I am so thrilled to have found this group! I was diagnosed four years ago ... along with periomenoupause. I've often wondered how I could connect with other women experiencing the same thing - to find out what we have in common that is a trigger, and could possibly lead to a cure.

I am 51 and upon diagnosis as permanent, irreversible and scarring, just started wearing hair instead. I've lost a good 3" of frontal hair and most of my eyebrows in that four year time period. And when the itching starts ... I know its active again and more will fall. I guess I've always had the attitude that I just need to find a solution and can't spend time being sad about it. Not that it doesn't make me sad - I just have to make a choice about if I'm going to live with it and make the best of it, or let it control me. I choose to be happy.

Some things that cross my mind about why would have triggered it: I don't take any meds regularly - other than Allegra for allergies. I do have asthma, but was diagnosed with that around the same time as the FFA. I grew up in a smoking household and smoked myself until I was 21. I used a tanning bed for years ... was a complete sun worshiper until I had my first child. I have two children, one of which I did fertility treatments for. I took birth control pills from the time I was 15 until I was 36. I stopped to have kids, and started again at 42. When I finally stopped taking the pill at 47 is when the hair loss started along with the menopause.

The best advice I can pass on is to find a reputable hair loss salon that will help with wearing hair and not gouge you. I was extremely lucky in finding a great one near Atlanta. I've since moved to Virginia, but they were a big part of me being able to face my hair loss with grace.

Permalink Reply by Terri on October 25, 2014 at 5:14pm

Dear Cubbieblue,

In January, I was prescribed Hydrochlorothiazide (Microzide - Brand Name) 25 mg tablet once a day to see if this medication could help to prevent kidney stones.

Within a year, I noticed my eyebrow hair was disappearing, so I went to my regular physician.  She referred me to a Dermatologist.

As soon as my Dermatologist saw me, he immediately knew I had FFA.   He asked if I was taking Hydrochlorothiazide (Microzide). Unfortunately, I had been taking it for almost a year.

He told me I was his 3rd patient within a month to be diagnosed with FFA that had also been taking this medication.

I had a total hysterectomy 18 years ago, so my symptoms did not start with menopause.

My Dermatologist told me to stop taking Hydrochlorothiazide.  He prescribed Betamethasone Dipropionate Lotion USP, 0.05% to be applied to my hair line and eyebrows twice a day.

After having used Betamethasone, my eyebrow hair has started to grow back.  The lost hair in my hairline has not and will not grow back.

I'm very upset that alopecia was not listed as a possible side effect of Hydrochlorothiazide.  If I had known this medication could cause hair loss, I would have never taken it.

I'm also depressed because I'm a widow in my 50's and this condition has caused me to be self conscious around other people.

My Dermatologist said I could undergo hair transplantation, but that would be very expensive.

I've been thinking about my situation and seriously want to bring the drug company to court and make them pay for hair transplants and medications, etc  I also want to force them to state hair loss or FFA as a possible side effect in their package insert for Hydrochlorothiazide.

Is there anyone else out there with a similar situation?

Thank you for listening to me.

Sincerely,

Terri