Replies to This Discussion

Permalink Reply by BBQueen on May 2, 2016 at 8:28pm

I was worried about plaqunil at first too bcuz of the damange to eyes but my dr said that is rare and after years of taking it. If your hairline has just started I would suggest taking it. You do not want it to get worse and it likely will. I wish i would have started it two years ago when I still didnt need a hairpiece. It seems to be the go to drug for FFA along with finastride.

Permalink Reply by BBQueen on May 2, 2016 at 9:07pm

I have also been having panic attacks and majorly depressed. I was in denial for a long time. I was in a very dark place all winter because of my hair loss. Ive been on plaq and fin for two months and Im hoping if nothing else it will stop it. But it takes so long. Im not a pill popper and I hate that I have to take it but I have to try to stop this. My dr said to use Desonide on my eyebrows and it seems to be helping them. I also put it on my hair when i feel the crawling. It seems to stop it for a little while. Its a milder clobetosol. I pray and hope everyday that something will happen and this problem will go away. Another lady on here (SJC) said finastride is regrowing some of her hair and I hold on to that thought almost every minute of the day.

Permalink Reply by sallylwess on May 2, 2016 at 9:34pm

If I were just recently diagnosed and did not have a lot of loss, or even if I had a lot of loss, I would take it.  My doctors at one of the best hospitals in the United States who treat me for other issues highly encouraged me to take it and said it was quite safe.  You just have to follow the protocols with eye exams, etc.  I was not able to take the drug when I tried it because it caused severe GI and stomach issues.  That can happen.  If I could take it, I would.  I take finasteride. I am seeing some new regrowth after losing at least three inches of my hairline and after losing much of my hair at the crown.  No other treatments have given results.  Finasteride has stopped much of the loss and given new growth in just four short months. 

Permalink Reply by BBQueen on May 2, 2016 at 10:05pm

Hi Sallylwess, How much new growth are you having? Would you say solid growth all over or just a few hairs? Is there hair growing in areas you thought had scaring? Im so desperate for good news. :)

Permalink Reply by Cheryl on May 2, 2016 at 11:02pm

I took Pacquenil for about 10 months, and did experience a few vision issues. It did help the inflammation, but I was switched to finasteride and I feel that has been more beneficial. My dermatologist has over 100 patients with FFA, and is one of the 9 sites in the US recognized by CARF. The finasteride did cause me to gain 10 lbs, not happy about that! I did also have breast heaviness initially ( both known side effects) but that has gone away. I live in Oregon. I hope this helps :)

Permalink Reply by KarenGinny - Iowa, US on May 3, 2016 at 10:51am

I just wanted to say, I tried plaquenil back about 2 years ago, and I started getting an itchy rash after taking it. So my derm told me to stop taking it. I'd had no other changes in meds, so it must have been that. So if you take it, just be aware of any other changes in your skin.  Since then I've been taking Methotrexate and not had any side effects. It is supposed to stop inflammation and seems to be helping.  I've already lost a lot of hair in front, sides, temples and wish I had started dealing with it sooner. My first derm, about 4 years ago, gave me cortizone shots and that seemed to only make it worse, then he did a biopsy, told me it was FFA and that there was nothing I could do. That really depressed me and I waited a year before I found another doctor who was much more positive about treatment options. I don't wear a hairpiece or wig, I just try to hide it by growing longer bangs and styling it. But that doesn't help much when it's windy outside, so then I wear a soft headband over the bald areas, or carry a hat with me.  When I initially told a few family members, they were like "it's just hair",  and weren't very sympathetic. So I just do my best to hide it. I try not to obsess over it, but I still feel need to always check a mirror to see if my bangs are in place, comb it again, etc. And I think we all understand here that while it may not be a life threatening condition, it greatly affects our self-esteem and ability to be social. 

Permalink Reply by sallylwess on May 3, 2016 at 5:00pm

K9crazychick, I am very sorry that you are having to join others of us already on this journey of hair loss because of FFA and LPP.  LoriC is so right.  Your hair is worth fighting for.  I wish I would have begun the fight before I did.  I listened to the doctor who first diagnosed me and believed him when he said that nothing could be done.  I believed him when he said that the "dangerous" drugs like one that was really a anti-malarial drug (Plaquenil) had been used to treat this condition, but it had not done any good.  It took me three years and three doctors before I actually took Finasteride.  It had been offered to me previously, but I was afraid of the side effects, was discouraged against taking it by my pharmacist, and I thought it was not going to really work.  I wish I had tried it sooner.

I  have long known we have to advocate for ourselves.  If a doctor won't treat me with known treatment drugs, than I find another doctor.  My current doctor is associated with the University of Colorado.  

Yes, I am having some new regrowth.  It is not anything to write home about.  They are stray individual hairs along my current hair line.  I have one hair that tries to come out in the scarred area of my forehead.  It breaks off after is gets about a quarter of a centimeter long. I know that is pretty short, but it is a hair that is trying to come back!  My hair dresser says that she sees black dots all over my scalp where hair is missing.  I haven't seen her for a bit, so maybe there is hair there.  I feel it when I rub my hands on scalp.  It feels like a man's beard.  (less hair - I only feel the stubs in a few places.)  All of this encourages me.  Finasteride seems to be the reason I am having positive results.  I have put on over five pounds.  It is probably from the finasteride.  I think it has stopped the hair loss significantly.  I no long have hair entangled in my fingers when I wash more hair, nor do I see hair in my brush.  

I have had symptoms of this disease for ten years now.  I was diagnosed in 2013.  I had noticeable loss by 2011 and 2012.  I had seen three doctors before I was diagnosed.  I lost my eyebrows overnight in 2012.  

Hair is just hair.  That is true.  The next time someone tell you that, ask them how much they spent on caring for it last month.  How much in products, color, and cuts?  That will tell you how important their hair is to them.  Hair is a major part of our identity.  Our faces may age, our bodies put on weight, we get gray hair, that we experience and see in others,  but we never  expect NOT TO HAVE hair.  I think FFA is especially hard because it doesn't look like thinning hair that we see in older women, nor does it look like a total loss of hair that we might see in alopecia totalis or in cancer hair loss.   FFA hair loss makes us look different.  It makes us look like we are sick.  It sets us apart from other women.  Therefore, whether we are vain or not, hair loss causes us much emotional stress.  We feel it when we wash our hair, style our hair, dress for the day, dress for special occasions, and participate in any type of human interaction.  It is a major life loss.  

I have grieved it, accepted it, cursed it, wished it were not so, accepted it again, cried buckets, spent a fortune in hair pieces, and I'm still on the journey of trying to fully accept this new reality for my life.  I think talking about it is the best thing we can do for ourselves.  Support from others is vital.  My best friends, my husband, my children and grandchildren all have seen me living life at home with no hair.  I've lost so much hair and have been like this long enough to not really remember what life was like without the lack of hair look.  I wear hair when I go out, or when I have guests in, because I am more comfortable.  If a neighbor rings the doorbell, he or she gets the woman with no hair.  Most of my neighbors are used to that look now.  I often get the mail without hair.  Headbands no longer work for me.  All of this openness about my situation does not make it easy.  It just allows me to live my life not worrying about who might see me without hair. 

This is long, but I wanted to share my journey with you.  Yes, it is a spiritual journey also.  I will be going to the CARF Conference in New Orleans next month.  I hope to see some of you there!  http://www.registration123.com/CARF/2016PDCONF/GeneralInformation.cfm

Permalink Reply by Kikibob on May 6, 2016 at 3:29pm

Sallylwess, I am in Colorado too.  I have had breast cancer and am afraid to try Finasteride, but am considering Plaquenil.  For now, I am on an anti-inflammatory diet, taking supplements (like Tumeric) to reduce inflammation, going to acupuncture and using Clobetasol now and then.  What I was wondering is if you are seeing a dermatologist at UC medical center, or an immunologist, or if you have a recommendation for a good physician to treat FFA in Colorado?

Why is it that in the US you see the physician that treats the body part your auto-immune system attacks, and not an immunologist?  Anyone going to an immunologist?

Thanks,

-K

Permalink Reply by Kikibob on May 6, 2016 at 3:47pm

K9crazychick - I just realized that I replied to Sallylwess's comment on your post... AND I'm sorry to learn of your diagnosis!  I wanted to say to you "Oy, do I understand about ups and downs and likely similar feelings to what you describe!"  This is a crazy disease and I keep asking myself "How did I get this"?  I blame the Tamoxifen I took for five years, I blame too much Advil, I blame sunscreen and my high-end "old lady" skin creams, I blame careless eating habits that lead to inflammation... who knows! I feel like if I knew what caused it, maybe I could make changes that would stop it.  I've stopped taking all aspirin and NSAIDS, I'm on an anti-inflammatory diet and supplements, the acupuncture is both for inflammation and stress, I brew and take a medicinal tea from Chinese herbs, I don't wear my expensive skin creams anymore and rely on natural oil based moisturizers.  I'm trying to learn to meditate, but I'm hopeless at it. I can't see myself doing the AIP diet because of all the "organ meat" you are supposed to eat.  If you learn more about Plaquenil, I hope you will share.  I know that people say Finasteride has helped them with regrowth, but I just can't take a hormonal product after my early stage breast cancer.  So, I'd like to know if anyone with FFA has actually had regrowth with just Plaquenil.  I'm so glad this group is here and we can at least suffer this journey together and boost one another up from time to time.

-K

Permalink Reply by Jacqui on May 7, 2016 at 10:59pm

Hello from Aus K9crazychick.  I am 45 and have been on Planquenil for over 12 months now.  I get my eyes checked every 12 months and 6 monthly blood tests with no issues.  I started on 200mg per day and now and on 100mg.  Since dropping to 100mg though I have noticed some more inflammation around the fair follicle so I really should ask my derm if I can go back up.  Or maybe it is my imagination.... FFA does that to you - the constant study of ones hair line.  My derm or GP are not too fazed about the risks of Planquenil..... neither and I really.  

My journey stared with losing my eyebrows and then noticing the bumps on my hairline.  Once I got to a derm she knew straight away what is was.  Can still hear the word "allopecia" ringing in my ears.... She said the only thing we could do was try to slow it down hence the Planquenil.  Reading this awesome forum though enables me to suggest other things for her opinion.

As for the mind game that FFA is.....well like many it swings around.  Sometimes I can shrug it off and other days it feels like doom and gloom.  I can cover the loss so far with my hair but know this won't be the case forever.  I find it hard to talk to anyone about it apart from my sister as they don't get it.  I constantly looked at other people's eyebrows and hairlines!

I think it will be swings and roundabouts for the journey and I wish you well.