Replies to This Discussion

Permalink Reply by Celia on October 25, 2013 at 1:48pm

Hello Ann - welcome, if that is the right word !  You will find a lot of information on the FFA site.  If you can bear to read through some of the posts, you will find it useful.  It seems FFA progression is different for each sufferer, several people have had it for a number of years.  I was told by the first derm I saw nearly 2 years ago that there is no cure just acceptance.  That said - there is treatment in the form of medication, however it appears that the meds do not work for everyone. My advice would be to go back to the associate - tell him to stop being so negative and ask what meds are on offer.  Hydroxychloroquine , tab twice a day, clobetasol cream for the inflammation and poss doxycycline, anti-biotic.  I hope you get something started - at least you feel you are doing something.  Good luck ! X

Permalink Reply by Ann on October 25, 2013 at 6:38pm

Hi Celia,   Yes, I have gotten some treatment, just stalled at this time because of no current dermatologist and I had to stop taking the hydroxychloroquine because I had increased migraines.  So I'm stopping it for a month to see if that was the trigger.

Wondering if anyone else had bad side effects from hydroxychloroquine??

Permalink Reply by silversurfer on October 25, 2013 at 2:12pm

This sounds very much like mine. My hairline is receding around my ears now and forehead has receded about 2 inches. Am finding it difficult to hide it and am now looking at wigs. I see my dermatologist next week so I'll see what she has to suggest

 

Permalink Reply by Ann on October 25, 2013 at 6:40pm

So sorry to hear about the progression.  I can still hide mine, but can see it won't be for much longer.  Good luck with your visit.

Permalink Reply by Mary on October 25, 2013 at 3:51pm

Hi, Ann

So sorry to see you've been hit with the FFA whammy. I've had it for at least 5 years (I suspect longer), though right now it seems to be at a standstill (after I've lost about two inches of hairline from ear to ear). I'd gone to two dermatologists and did cortisone shots, hydroxychloroquine pills, and clobetasol foam applied directly to the scalp. Nothing worked for me, though others on this site have reported success in their treatments.

But I'm writing today to tell you there is hope in something calleds hair follicle neogenesis, something that ". . . could make hair transplantation available to individuals with a limited number of follicles, including those with female-pattern hair loss, scarring alopecia, and hair loss due to burns.” (I added the boldface and underlining).

This information was published on October 21--just four days ago--by a leading hair loss research doctor (herself a sufferer of alopecia areata), Dr. Angela Cristiano, at Columbia University:

http://newsroom.cumc.columbia.edu/2013/10/21/hair-regeneration-meth...

This would work even for those of us with SCARRING ALOPECIA--yay! Hair Follicle Neogenesis is still in trial stages, but it's a major breakthrough, which was also reported just days ago at these two sites (Dr. Bernstein, NYC specialist in hair transplantation, and Forbes Magazine):

http://www.bernsteinmedical.com/research/study-is-substantial-step-...

http://www.forbes.com/sites/melaniehaiken/2013/10/22/researchers-re-grow-hair-in-mice-offering-hope-for-hair-loss/

I had a consultation with Dr. Bernstein via phone in NYC; he told me I was not a good candidate for traditional hair transplants. But this new breakthrough process--hair follicle neogenesis--could work even for those of us with FFA. And it seems it may be available in the near future.

Dr. Angela Cristiano is also on youtube.com explaining the breakthrough (Columbia University posted the YouTube video of her announcing the breakthrough news.) In the Forbes article, it says she suffers from alopecia, which is the incentive that drove her to research hair loss.

I have my fingers crossed, as nothing else has worked for me--not drugs, not steroid shots (and hair transplants are not an option). Good luck in trying out the drugs option--it may work for you. Meanwhile, I have many different coverups--several "toppers," a couple of wigs, a clip-in bangs thingy, as well as caps and hats--to help me look my best.

Permalink Reply by Ann on October 25, 2013 at 6:45pm

Hi Mary,

Wow - that's a lot of information.  Thank you for sharing.  I hope it works for you.   I am just now wrapping my mind around having to start looking at wigs and/or hair pieces, which I know nothing about.   I am so resistant to it.  I have never liked wearing anything on my head.  I guess I have to get over that. 

Permalink Reply by Annie on October 25, 2013 at 4:02pm

Hello Ann,

Welcome to our group.  I'm sorry for your experience with the doctor.  Unfortunately, your story is all too familiar.  I think most women in this group have been to more than one doctor.  I diagnosed myself with ffa via the internet in March, 2013 and  quickly scheduled an appointment with my dermatologist of 15 years.  He said that it's natural for women's hair to thin as they age, and tried to send me on my way.  He didn't even take one look at my hairline until I put my foot down and forced him to look closer.  I honestly thought he was going to cry when he finally looked at the bare spots on the side of my face.  He said he needed to speak with his partner and bolted from the room, only to return15 minutes later with the other doctor.  After consulting, they finally decided to give me a topical steroid with instructions to return in 4 months.  When they left the room, my doctor told me to have a nice day.  Have a nice day?  Are you kidding me????  Needless to say, I went home an did some research on the internet.  I asked a friend of mine who is a nurse for a recommendation for a good dermatologist.  I was much better prepared for the visit with the new doctor three weeks later and asked for a more aggressive treatment plan, which he agreed to.   Anyway, my advice to you is to get an appointment with another doctor as soon as possible.  You can contact the Cicatricial Alopecia Research Foundation (carfintl.org) to find out if there are any doctors in your area with experience treating ffa.  CARF will also send treatment recommendations to any doctor who has never treated someone with ffa.   Good luck to you.  Don't be afraid to ask questions from the ladies on this site.  I've learned an unbelievable amount of information from them.

Permalink Reply by Ann on October 25, 2013 at 6:34pm

I did find the CARF website and have tried twice to ask for help.  I have never received a reply to my emails.   How long does it take?   I did get a reply from someone at the local support group, but they're not meeting again until after the first of the new year.  

Permalink Reply by PamW San Diego, CA, USA on October 25, 2013 at 9:42pm

Check your spam or junk mail folder. Sometimes their emails go there.

Permalink Reply by April on October 25, 2013 at 4:28pm

Hi Ann!  Welcome to the group.  Did you have a biopsy of your scalp done?  If not, you really should because that will tell you for sure if it is FFA or something else.  It does sound like FFA, although the loss of patches away from the hairline I don't think is typical for FFA.   Mine has progressed very slowly, but more rapidly since March/April of this year.  It seems some people do get the inflammation on the scalp and some don't.  I think all of us on this forum can relate to how devastating this is, sorry.  There are definitely treatments you can try, you will find a lot of the things people are using if you look through the comments here.  You will find a lot of support here if you need it.  Keep us posted : )

Permalink Reply by Ann on October 25, 2013 at 6:32pm

Thank you for all of the replies.  It's such a relief to find others who understand how difficult this is to deal with and to find help for it.

Yes, my first dermatologist did a biopsy to confirm FFA.   She started me on clobetasol solution and shampoo, which did nothing.  Then injections - first time no effect.  2nd time a good effect (she doubled the dose), but when I saw her again, she didn't want to do injections again so soon because she saw some thinning in my scalp.   She did start me on hydroxychloroquine, but a low dose (100 mg).  She was being conservative because I have one kidney.  However, I started getting increased migraines, so I have stopped it for a month to see if that is the trigger.

When I went to her associate (just after the increased inflammation), he didn't really look at my scalp.  I called to see when my dermatologist would be back and was told January, but she's already booked until March!!!   Apparently, this practice has 2 new dermatologists starting next week and they will call  me with information regarding who I should see.  I do also have an appointment on Jan 28 with someone in Boston at Brigham and Women's Hospital.

In the meantime, I am eating a plant-based diet (Eat to Live by Dr. Fuhrman) and using his autoimmune protocol.  I'm also taking high dose of fish oil.   The EPA in fish oil acts as an anti-inflammatory.    Trying to be patient....

 

 

Permalink Reply by Debs on October 28, 2013 at 3:39am

Hi Ann and welcome to the group.  I have also been following the same diet protocol as you since July this year, I am juicing vegies at least once a day, sometimes twice and am using the anti-inflammatory diet, I have just bought Dr Furhman's Eat to Live Cookbook.  I also use the info from Dr Weil on nutritiion (which is basically the same as Dr Furhman).

 

I am taking the hydroxychloroquine sulphate, 2 tablets a day since March, the hair loss has slowed up a bit but it is still receeding.  I see my derm on Friday and will talk about starting the doxycycline antibiotics, I am still unsure about the steriod injections because if the dents they can leave in your scalp.

 

This is a very difficult condition because we all have a slightly different progression of hair loss and react differently to the drug regimes so it is very much a case of trial and error to see if something works.

 

You are doing everything you can with Dr Furhman's diet, I would say try to be kind to yourself, give yourself a few treats; a nice pedicure or a shopping trip!!! this is a challenging condition and we need to look after yourselves. 

This group will be here for you and offer advice and support. XXXXX

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