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Comment by Debs on April 15, 2014 at 1:31am

April you might find it helps if you can attend support group meetings for alopecia or link up for a coffee informally with another FFA patient in your area. I would ask your derm to pass on your email address to other FFA ladies they are treating so you can meet in person if there is not already an alopecia support group set up. In the UK C very kindly has hosted 3 get togethers and I go to an alopecia UK support group where anazingly I have met 5 more ladies with FFA. Psychologically it is a great help to met other FFA ladies in person.

Comment by April on April 14, 2014 at 10:45pm

MJ, I have been thinking a lot lately about how most of the suffering of this disease is in the mind, as this is not physically painful for most. Perhaps the only way to overcome it is in the mind as well. Easier said than done I know, but I think things like yoga, meditation, and reducing stress help. I need to do more if that these days!

Comment by MJ on April 14, 2014 at 7:45pm

April, I can so relate to the feelings you are expressing. I was doing very well once I got past the initial shock, anger, anxiety. Changed my diet completely, read a lot of mind/body connection, and stopped close mirror exams, and really felt I had shut FFA off in its tracks. This past week, I had a glimpse in the rearview mirror in broad daylight and there appeared to be more loss...felt myself slip back a bit in attitude. Trying to get my mind back in control of my body. I guess ups and downs are to be expected!
MJ

Comment by April on April 14, 2014 at 6:27pm

Anne, if it makes you feel any better, my aunt just had eyebrow tattoos done and they actually look great! Very natural. I know it is so hard to actually face this reality though. I avoid looking in mirrors anymore because it stresses me out. Well, good luck tomorrow, and just remember that you are doing the best you can with what you have been dealt. Let us know how it goes: )

Comment by Anne Louise on April 14, 2014 at 3:26pm

April I have the same worry about my hair as it is thick and curly too. I'm getting my eyebrows tattooed tomorrow and I've been so emotional the past few days. When I made the appointment two weeks ago I was excited. Now I'm mad that I have to pay $650 to attempt to restore what I once had and sad to face the reality that my eyebrows are not coming back. The woman doing them is a true artist and I've looked at tons of pictures of her work, but I'm still nervous as to how it will all turn out. I know eventually I'll be glad I had this done, but I've been a bit taken aback by my sudden apprehension over it all. I wish I had some tips about how not to be too stressed over this, but it is all still so new to me. I guess denial has been somewhat helpful but facing the cold hard reality of tomorrow kicked that to the curb.

Comment by April on April 14, 2014 at 12:19pm

Hi ladies!  Debs, the laser is xtrac laser.  From what I understand it is pure UVB light and the wavelength is 308nm.  I get it done at my derm's office and my insurance covers it.  However, there are places that will do it without a script from your doc and you have to pay out of pocket. It is somewhat pricey I think.  Mostly this is used for psoriasis, but my doctor says it also clears lichen planus, so I think what he is doing with me is mainly an experiment to see if it will work for FFA.  I will say that the results have been very good, but it took a while to see them.  I have been getting the treatments for 7-8 months.  I don't want to give anyone false hopes as I don't think this has completely arrested the hair loss.  However it slowed down a lot, almost not noticeable unless I compare to where I was a year ago.  Ugh, I don't know, I was doing so well for several months not thinking about this really at all.  I've been stressed recently because we just bought a house, and moved, and I'm applying for jobs and going on interviews.  Anyhow, been feeling like my hairloss is getting me down, and I keep looking at my eyebrows and eyelashes thinking they look thin, then the next minute I think they look ok.  I still have hope, I definitely do, but also trying to come to terms with the fact that this may never go away completely.  Anyone have any tips and how to not be so stressed out about this??  Also, any good ideas for covering up hair loss.  My hair is very big, curly, frizzy and wild.  I don't know how a hairpiece would ever blend in with that!  Thanks for listening: )  So grateful for you all

Comment by Annie on April 10, 2014 at 11:50am

Hi all, just catching up on the latest posts.  April, I'm excited to hear that your laser treatments are working.  I think we would all love to try a drug-free approach to treating ffa.

I just returned from my 3-month check up with my derm.  I have been taking Plaquenil for 9 months now, as well as using a 5% Betamethasone topical.  The doctor was fairly pleased.  He was hoping that the ffa would no longer be active at this point, but there are a couple small stubborn areas that are still active.  I see him again in six months unless I experience a flareup.

I have just noticed in the last month or so that I'm not shedding quite as much.   The pain has gradually lessened since I started the Plaquenil/topical regimin, but it's still quite painful whenever the wind blows hard.  The doctor said that it can take years for this kind of pain to go away, and sometimes it doesn't.  The good news is that it doesn't mean that my treatment isn't working.  

Comment by Debs on April 10, 2014 at 2:31am

April, can you please advise where you get your xtrac laser treatments ? and what is the cost ? Lasers are not offered on the NHS in the UK but there are laser helmets we can buy fir about £660 but this may not be the sane wavelength that your derm uses. Glad you are having less inflammation

Comment by Brenda, IL US on April 9, 2014 at 8:50pm

Hi Ladies, I saw my derm last week and my FFA is very active.  The inflammation extends almost to the crown of my head.  She did several injections and recommended i get them every four weeks.  I think i'm going to stop using rogaine and continue with clobetasol, doxy, and plaquenil.  Getting eyebrows tattooed on April 29.  Excited!

Comment by Jean on April 9, 2014 at 4:39pm

Hi everyone

A really interesting discussion - I've thought for ages that an over-active immune system is somehow at the route of FFA.  I have a damaged bile duct which leaks bile into my gut (liver, kidneys etc) and this stimulates the need for my immune system to work overtime.  I'm hoping to see a specialist at Kings College Hospital very soon with a view to repairing my bile duct.  I'll obviously report back if my improved gut leads to a calming down of my immune system and ultimately remission in FFA. psoriasis and arthritis.

Watch this space!!

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