Comment

Comment by Kath UK on July 10, 2013 at 8:04am

Hi Celia - I can honestly say that I do not wake up every morning and immediately think about FFA.
Of course, I have had several years to get used to gradually losing my hair and I've found that it's something I've now learned to accept.
My daughter - a young mother - has been diagnosed with a far more serious (and potentially crippling) auto-immune condition and is being very positive, pragmatic and brave about it and though she is a constant worry, her diagnosis helped put my problems in perspective for me.
I have decided to get on with my life and if people don't like what they see when they look at me - well they can look the other way!
I enjoy my wigs - they're fun, look good and boost my confidence but I don't feel I am defined by my hair.
I've decided focus on the fact that in many ways I'm blessed.
The bottom line - for me anyway is that I detest having FFA but I refuse to build my life round it.
Sorry to rant a bit. This support group is really good and supportive and my heart goes out to the ladies who are newly diagnosed. It's a tough time for you all, I know.

Comment by Jules UK on July 10, 2013 at 4:57am

Welcome Terry. Glad you've found us! We all support one another.
I'm putting together a list of issues raised in our discussions for the focus group meeting next month, but will run it past you before then for amendments.
Celia, the first thing I do on waking is make sure I pull my hair down over bald bits and try to make my thinning fringe reach over where the eyebrows should be. Can't imagine how my husband feels about the sight he faces each morning.... I'm still not examining my hairline closely; it's a form of denial ( alongside taking meds etc of course) that helps me cope. Going to price Regaine today but it might be too pricey.
Jules x

Comment by Debs on July 10, 2013 at 4:32am

Hello ladies, I sort of come to terms with my altered appearance and then blow me a few weeks later I lose more hair and I have to then try and get my head round that. I don't feel I can really get to grips with FFA until the hair loss stops and I can then get used to my new appearance. The feeling of anticipation mixed with dread can take over your life very easily. I think we have to just make ourselves happy with holidays, social life and nice family events to offset the unpleasant psychological effects of hair loss. Finding ways to normalise your appearance with tattoing eyebrows, eyelash enhancement and supplemental hair does give you a big boost to your self esteem and it does help to lessen the impact of the FFA on a practical level. This is however the single most devasting thing that I have experienced in my life and we must all really look after ourselves and allow ourselves to grieve for what we have lost. (To finish on a positive - my friends say my wigs make me look 10 years younger!!!!) xxxxx

Comment by Celia on July 9, 2013 at 6:28pm

Hello Terry - welcome.
I hope that it is comforting for you to find other people with this prob. I felt the loneliness initially when I was diagnosed - could not believe it !
But then googling and finding Alopecia World, and subsequently setting up this site - I found it very helpful. But what still surprises me................after one year - we have just 76 members in several countries. This is a rare and little understood and difficult disease to treat. As Carol USA said - it's not life-threatening but certainly life changing.
Terry - I hope you have a worthwhile trip to Salford - I don't know where you live, but there are a few of us who travel some distance to see him. My diagnosis was over 18 months ago when I was living in Dubai. I found the page that was taken from the Daily Mail, a UK paper - there was an article about FFA - the new epidemic among women...........from this I heard about Dr Harries who did a PhD in alopecia. Also mentioned in the article was Dr Carol Michaelides who works at the Philip Kingsley salon in London. I went there and found the experience quite hard to deal with. Having been diagnosed by a derm in Dubai - I wanted to find out more. But I got more of the same - no cure - only acceptance.

I think that Dr Harries is our only hope in the UK. Several of us completed a questionnaire recently and the results are still being processed.

I asked a couple of days ago if there are any of you who can wake up and not instantly think of FFA ?

I still am not going to tell anyone here apart from family. I cannot yet come to terms with wig wearing and I applaud those of you who have.
What is the name of the immune suppressant drug ?

What is the recipe for not letting this take over one's life ?
x

Comment by Annie on July 9, 2013 at 3:18pm

Thanks, Pam. I also contacted CARF because there are no doctors in my state listed as treating FFA that are in my insurance network. A representative e-mailed the article for me take to my doctor. I'm not sure I would have gotten the Plaquenil prescription without it. The doctors in my area seem to be very conservative. CARF will also correspond with your current doctor if he/she has any questions regarding your treatment.

Comment by PamW San Diego, CA, USA on July 9, 2013 at 2:34pm

http://http://www.carfintl.org/_articles/drugs-in-dermatology-2012.pdf

Annie and Rebecca, I am attaching the recommendations from CARF about the drugs that are recommended for FFA. I have actually taken this document with me to my dermatologist, who really appreciated it because I am the only one that she has ever treated with this disease. The specialist that I see from UCSD is also aware of these guidelines. Doctors do prescribe immunosuppressant's and they usually work but the disease usually returns after stopping.

Rebecca, prednisone is prescribed for the disease as a bridge until the plaquenil has a chance to begin working. My sister has to take this drug for her autoimmune disease and I know that there are many unpleasant side effects (the least of which is hair loss!) So, I guess we are all going to have to pick our poison based on how much we can all tolerate in terms of our hair loss vs. risk.

There are new biological drugs available now that people with arthritis, psoriasis, and Crohn's disease take - like Humera and a few others that I see on TV all the time. I am just wondering if these would be a possibility for us.

Comment by Annie on July 9, 2013 at 1:50pm

Pam W, I have also been researching immunosuppressant drugs so I can make an informed decision if the Plaquenil/Clobatesol combination doesn't work. From what I've read, the immunosuppressants work by keeping your body from attacking your hair follicles instead of just treating the inflammation. I can't imagine a doctor prescribing immunosuppressants with all the possible side effects. I've seen three different dermatologists since being diagnosed in mid March. All three recommended starting with a topical steroid only. It took a lot of convincing on my part to even get a prescription for Plaquenil.

Comment by PamW San Diego, CA, USA on July 9, 2013 at 11:53am

I have had redness on my cheeks and the bridge of my nose. I thought it was rosacea, but I think it is related to the FFA. My derm said the doxy would help with that. Also, my scalp is itchy at the nape of my neck and around my ears. I see redness in the center part. The redness and the itch are the signs of inflammation, and is how we know the disease is still active. The hair loss is the end result of the inflammation. The hair drops out because the follicle scars over to protect itself from the assault of what is attacking our sebaceous glands.

I also want to comment about the recent posts about the meds that work or not. It is true that the doctors are not sure about what works or not and whether or not anything can really stop this disease. However, there is a protocol of what they try. If after 3 to 4 months Plaquenil is not working, there are other drugs to be used, such as immunosuppressants, which come with greater side effects, but have a high success rate. Doctors like to exhaust all the possibilities before trying these meds.

Recently I saw a copy of Dr. Harries presentation that he gave at a conference in Scotland about FFA. In the notes he made mention of a topical form of Actos, but Liz, Debs, Jules and Celia have not mentioned him prescribing this drug. He does mention the finasteride, but that it takes a long treatment time, and I believe this drug is intended to help with possible hair growth and not the cause of the inflammation. I am interested in the topical Actos because that is a drug that can stop the inflammation, which is causing the itchiness and hair loss.

Also, there is some mention that our disease could be connected to an environmental agent such as dioxin, which can be found in animal feed and polluted areas. I just think that autoimmune disease is a result of many different factors such as genetics, environment, stress, etc (just like cancer). There is not just one cause and not one thing will cure us until they can find the gene that gets triggered to cause the inflammation.

My clobetasol is a foam and it is much easier to direct to itchy areas. My doctor told me to be careful about applying it near the face because it will cause the skin to thin. I only use it when I am itchy.

All of the derms say that diet does not play a role in our disease, but many, many people with LPP and FFA would differ with them. I have been gluten free for almost a year, try to avoid sugar and dairy. I don't know why, I guess I am just desperate to save my hair and be free of the constant discomfort that my scalp causes.

I know people say that it is only hair and it doesn't matter. It matters to me and I am not going to apologize any more for being so upset about it. This disease has greatly affected the quality of my life, my confidence and my self esteem. Yes, there are worse things, but this is bad.

Comment by Celia on July 9, 2013 at 11:32am

Ladies - do not worry unduly about thinning skin. Focus more on thinning hair !
I get facial inflammation from time to time and this is connected with the condition. Usually this is around the hairline on my forehead.Apart from the physical probs - is there anyone out there who is able to wake up and not think instantly about FFA ? Certainly the dermatologists don't have the answer to this either ! Interestingly enough.............the first derm I saw in Dubai had thinning hair - used rogaine....the trichologist I saw there also suggested he could do hair transplant....not an option with FFA, and the next trichologist I saw in UK was also displaying male pattern hairloss. I wondered whether this could be contagious.

Only joking !
I hope that those of you in UK are enjoying the lovely weather.
x

Comment by Rita - Canada on July 9, 2013 at 9:04am

my doc recently told me to use the topical clobetasol l week on 1 week off as she referred to the thinning at my frontal scalp as atrophied. I only apply it sparingly to scalp and experience some itchiness through the day. My doc, however, said to sprinkle it on and work through (not happening).

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