New to FFA and to this forum

Hi Everyone,

I'm not sure where to begin...I guess at the beginning!  I was diagnosed with FFA in April 2015 and a biopsy confirmed it a couple weeks later.  I believe my journey down this road started a couple of years ago, with my eyebrow and leg hair loss, then red, painful scalp.  I started noticing uneven recession at my temples in November 2015.  I thought I might have temporal arteritis, as (what seemed like) all of a sudden, my temple veins were very noticeable - almost bulging.  Like many of you, it took a while to find the right doc to get a proper diagnosis.  I started with my PCP almost 2 years ago when the scalp issues started, then a local derm, then an internet search which led to a specialist derm about two hours from my home.  

I honestly think I'm still in denial to some extent.  My derm says she doesn't have a patient whom she hasn't been able to get under control. She stated getting treatment early is critical and that it usually leads to maintaining the hair that is remaining at that time.  I've begun to question that after reading through this forum (and others).  I've read about only a few people in a static state.  I hear of so many who just keep receding.  This worries and saddens me.  I had such hope that what I had left was close to what I'd wind up with at burn out. 

  

My derm's treatment plan includes a tiered approach, starting with the least harmful drug:  1.  Doxycycline, 2) Plaquenil, 3) CellCept, and with Clobestasol topical with all of those, as needed.  I was on the Doxy for 3.5 months until it caused gastro ulcers; except for the ulcers, I had good response with no hair shedding and no inflammation.  I'm currently on Plaquenil for the last month to 6 weeks; I have only one side effect - horrible shedding. Much worse than before my diagnosis.  Gobs of hair in the shower drain, on my brush and all over the house, which started about 10 days to 2 weeks ago.   Because of this, my new treatment plan is one doxy and one Plaquenil, once daily.  I really was excited to try the Plaquenil as I thought it might be helpful to lower my thyroid antibodies (I have Hashi's), thus I was onboard for at least a 6 month try.  I'll continue with this regime for 2 weeks and see how it goes with the shedding. 

A little more info about me:  I'm 48, perimenopausal, have taken a variety of bioidentical hormones over the last 2-3 years, and am still taking bioidentical estrogen.  I've always been sort of a health freak.  I'm on the AIP diet since being diagnosed, but honestly, it's not much different from the way I've eaten for the last 20 years.  It does give me loads of energy.  I also exercise 4-5 times a week (cross fit, high intensity interval training, yoga, etc..); it's my stress buster.   I take few supplements besides D3 and flaxseed.

Anyway, that's my story.  Thanks to all of you for being a part of this forum.  I've read so many of your posts and while some have been painful (the reality of this disease and the possible fate of my hair), they're all authentic and honestly written.  It's nice to know I'm not alone.  Any advice or thoughts are welcome and greatly appreciated.

Stephanie      

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Replies to This Discussion

Permalink Reply by Gail on October 2, 2015 at 4:34pm

I noticed that most others have had a scalp biopsy. I did not. My derm just examined my hair and eyebrows, basing his diagnosis on history and appearance. Are there many others who did not have a biopsy?

Stephanie also brought up something else I had wondered about. Like Stephanie and another group member I have communicated with, I have had hair loss in a number of other areas, not just frontal scalp and eyebrows--including forearms, underarms, and legs (the latter two not being missed, but definitely abnormal for me!). Is this a normal part of FFA, or is there something else going on?

Gail

Permalink Reply by Dyners on October 2, 2015 at 5:24pm

Hi Gail & SJC!

I'm 48 and I got my diagnosis 3 weeks ago and no biopsy. The dermatologist was so sure, she said it was probably not worth putting me through it. She seemed very confident of the symptoms. I too have no leg hair, almost invisible eyebrows and yes very very sparse on my arms too.Still underarms there although I have read somewhere that that can happen in some cases. I also have the bulging veins at my temples and have lost a large patch above each ear up to the temple. I try not to put my hair behind my ear, as otherwise very visible that something is wrong. I haven't told many people yet. My scalp however has only been mildly itchy so far. I'm due to go back for my first suggested treatment in 5 weeks, but feeling unsure about the side effects as it's hydroxychloroquine. The dermatologist has told me I'm an unusual case, as FFA is still not that common especially before the menapause and would like me to attend a meeting for interesting cases. Would love to find common links. My mother-in-law curiously has had exactly my symptoms for about the last 10yrs, but no diagnosis nor treatment. Her's has stopped now. I'm in the UK. I used to take regular Vitamins, but since all the mention of Vitamin A on the forums I've stopped. I've been researching the net almost everyday since I've known what it is. I do take some comfort in finding all these other people who are going through the same thing. It's good to hear other's experiences.  

Permalink Reply by SJC on October 2, 2015 at 5:26pm

HI Gail,

I can tell you that my doc stated the peripheral hair loss is all associated with FFA.  Arms, legs, brows, sometimes lashes and even pubic hair.  So is thinner skin and more prominent veins in the affected areas.  On my forehead I thought it might be the Clobetasol doing this, yet she gently explained that it was the disease. 

I'll let others chime in about the biopsy, although my doc was very certain upon physical examination that this was FFA and did the biopsy just to see the extent of the disease, along with ensuring her certainty. 

Stephanie

Permalink Reply by MJ on October 6, 2015 at 5:32am
Curiously, I had prominent veins on each temple, not at the same time, early in my diagnosis. My dermis not equate it to FFA. They are no longer visible. Hmmm.
Permalink Reply by Joy on October 9, 2015 at 11:53am

My vein prominence has gone away as well!

Permalink Reply by Joy on October 9, 2015 at 11:52am

I had a biopsy and was diagnosed with FFA and guess what - the hair at the biopsy sight has grown back - I really do not understand how that could happen!

Permalink Reply by MJ on October 2, 2015 at 8:32pm
Stephanie, sorry to hear about your diagnosis. I know it is difficult but you need to know that you will find your own way to deal with the emotional aspect of this in time. I am almost two years out and two years ago I was projecting that I would be in a wig by this time. Whether or not treatment had any bearing on it, I am still able to hide my hair loss.

I have come to accept this fate and only periodicAlly get into a funk and start obsessing. It doesn't last long. I find that when I am eating well and active, I feel better. This forum has been a wonderful means of support and reassurance. Welcome to the group.
MJ
Permalink Reply by PamW San Diego, CA, USA on October 2, 2015 at 9:16pm
There are people who are responders to the meds. Doctors would not have the protocol and tier treatments if it didn't work. One other drug I'd like to throw into the mix is Avodart. There was a study out of Duke that showed it was the most effective in controlling the hair loss. I don't want you to think that there isn't hope, because there is! I would have faith in your doctor, especially if you are lucky enough to have found a doctor who has other patients with the disease. Many women don't reach a doctor who knows about this disease until it is too late.

By the way I took plaquenil for almost 8 months until,I thought it was helping. Everyone is different, which is why this disease can be so frustrating.

Good luck.
Permalink Reply by SJC on October 5, 2015 at 11:18pm

Thanks to all for their replies and thoughts.  Yes, I feel very confident in my doc; she is knowledgeable and has treated many of us.  She'll also host the CARF doctored patient conference next year.  I am disappointed that I'm not tolerating the available treatments - I will keep trying though.  I certainly know this is almost trivial compared to other, horrible diseases in this world.  While my hair doesn't define me, I'd rather keep it then lose it. 

Permalink Reply by Hopeful on October 7, 2015 at 8:02pm

Hello, I am newly diagnosed FFA. The doctor that I saw at UCLA is just covering for the hair loss specialist that is out on maternity leave until December and wants to wait for her to treat me. I am desperate to get into see someone that can help me now. My hair loss continues daily and now is very hard to hide as the loss is front and center- literally. Can anyone recommend an FFA specialist in southern California? I need to see someone ASAP. I am hopeful as I see Pam is from San Diego.

Permalink Reply by PamW San Diego, CA, USA on October 7, 2015 at 8:08pm
My doctor is in San Diego. Her name is Dr. Ann Truitt of Rch Healthcare. If you want someone in the L A area, you should contact CARF and they have a list of physicians that are experts in each area. Good luck!
Permalink Reply by Hopeful on October 7, 2015 at 8:39pm
Thank you so Pam. You are really happy with her and feels she is extremely knowledgable when it comes to FFA? I have seen so many derms that have just told me to use rogaine. Now that I have been told I probably have FFA, I am so desperate to get started on treatment. I am bummed that so many doctors just dismissed me....I could have possibly slowed progression so much sooner. I have been dealing with loss for 2 years now.

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