Comment

Comment by MairiM on September 25, 2012 at 4:21pm

Lots of messages tonight - just shows how well the group is working. Can't thank you enough, Celia.

Comment by MairiM on September 25, 2012 at 4:09pm

Obviously not worth a trip, then :-(

Comment by MairiM on September 25, 2012 at 3:55pm

Sandy - will let you know how much it is when I get the bill from the consultant I saw. You would certainly get an appointment up here much more quickly. I only waited 4 weeks - might be worth a trip, but I don't think I know where you are.

Comment by KarenGinny - Iowa, US on September 25, 2012 at 12:04pm

Hello all. I just wanted to add more of my info. I have been dealing with this since October of 2010, almost 2 years. It started with the itchy dry scalp, finally so bad I went to a dermatologist. He gave me cortisol shots several times and Clobetasol shampoo and liquid treatment. Then it progressed to hair loss all over and a strip in the back of my neck which did grow back. Then about a year ago noticed the hair at my temples pulling out with just a tug. It was a very stressful time as my husband had just had a mild heart attack and was in the hospital 2 days. Then it seemed like before I knew it, my entire forehead, temples and sideburns were gone. It's now about 2 - 2 1/2 inches back, maybe more in spots. I think it has mostly stopped - burn out I think. My dr diagnosed the FFA in March of this year and said there was nothing I could do about it; that the hair follicles were dead and would not grow back, but that it would eventually stop. So now my hair is much thinner -thinner on my right back side and thicker on the left. My eyebrows don't seem to have been affected so far. I do have a bare patch on one arm. I style my hair with my bangs longer & brought to the front to hide my ears. I've gotten used to wearing a hat when I'm outside and it's windy. Have not looked into wigs, but not really wanting to do that unless it gets much worse. I have been trying to eat a healthier diet, low fat, less artificial sweeteners- even gave up my favorite diet soda!- more water, fruits, veggies, whole grains. I have lost about 10 pounds and still working on more. I would try gluten free if I thought it would help. I have a little arthritis in my feet, thyroid problems, high blood pressure, not yet into menopause. I'm 47 and a stay at home mom of 2 boys, 10 & 12. I really just want to not let this rule my life and to stay active with my kids without worrying about my hair! My family -sisters - know about my hair loss but if they saw how really bad it was, they would probably be shocked. Unless it's more obvious than I realize?? I'm so glad I have found you all here to spill my guts to. It helps to know I'm not alone.

Comment by PamW San Diego, CA, USA on September 25, 2012 at 12:19am

Hi, Chris. I have been taking Plaquenil (generic) since August and sometimes I am itchy (hands) but I take a Zurtec and I get through. I am going to ask about Protopic because my doctor did say Clobestasol can cause skin thinning. I will ask about Protopic but I doubt if insurance will cover the cost. They only pay for generic drugs. Enjoy your MAC!

Mari - you have really touched my heart with your heart felt feelings about our disgusting disease. So far, the only good thing that has come from all of this is meeting (virtually) all of you.

Celia - you sound like you have so much spunk. What are antinflammatory tabs? I think there are probably many triggers for FFA -- hormonal, environmental and diet and that is why what works for one person doesn't work for the other.

CJ - I cannot wait until you have your conference. I have been reading about all the diets that people have put themselves on (paleo and anti-inflammatory) and I just can't help but think that some of it is almost a cult. How can a diet high in animal fat (paleo) be healthy? I am trying to cut out gluten and see if that helps. But I think sugar and artifical sweetners aren't good, too. Pay attention to how you feel on days when you don't have sugar or sweets. Do you feel different?

I am so happy to hear that this burns out!! Sandy -- didn't you say you thought you were at the end?

Comment by ChrisC. Chicago, IL on September 24, 2012 at 8:34pm

Hi everyone, I'm sitting in an Apple store waiting for my iMac info to transfer…thought I'd check in. Had an appointment with my new doc and she has switched up my mess a bit. She doesn't like the Clobetasol steroid for long term. It thins the skin, so I am starting Protopic which is anti-inflammatory but not steroid. It is super expensive…not generic yet. I have a sample so am trying out as I take a break from the steroids. She kept me on the Finestride although she was not sure if it was really helping the FFA. I will get an eye exam and start Plaquenil. And continue with Minoxidil. That is it for now…my MAC is ready!

Comment by MairiM on September 24, 2012 at 5:45pm

Thanks for dermatoscope info. I am same height and almost same weight as you - the latter due to my love of cooking (as well as wine!). I no longer get enough exercise - I am not so keen on walking out or cycling because of the hair problem. This may change as I can wear a hat in autumn/winter. I have always tried to buy good ingredients - we are very lucky here in Aberdeenshire. I do always try all the small shops first before I resort to the supermarket. I never buy ready meals and have never used canned drinks. I did use HRT for the number of years allowed here (can't remember how long that was). This may account for the fact that my onset of FFA seems to be later than others. I have in the past had small patches of psoriasis, but they have now gone. My sisters have asthma and one has eczema.

Comment by CJ- Christine from Ottawa Canada on September 24, 2012 at 5:06pm

the device was likely a dermatoscope - essentially a high powered magnifier...
I'm in the middle of menopause. My scalp whcih was only a bit red 6 months ago and just a wee bit itchy is now really painfully sore and itchy. I've lost more hair....

I met some people at the Boston conference who lost alot of hair before the disease 'burned out' . If it is associated with menopause or hormones, I wonder if using HRT could help? I'm looking into that. They've cleared HRT now.
I don't smoke, drink wine almost daily am 5'1 and 145 pounds. My extra weight is most certainly from the wine. I work too much, live in the city, don't drink diet sodas, but used to.
I also have eczema, some small patches of psoriasis and worst of all, lichen sclerosis and atrophy--- all somewhat immune - inflammatory diseases. I should try the anti- inflammation diet.. but I can't bring myself to try another diet. I'm hoping to learn more at the conference next month.

C

Comment by MairiM on September 24, 2012 at 4:02pm

Today I went to Dundee for an appointment at Fernbrae Hospital. The dermatologist there said that FFA is now quite common. He has had many cases - in the majority of these it has burned out within 2 years and most of his patients have not needed cosmetic enhancements such as wigs. He is against steroid injections - said that, while they may give the impression of being successful in some cases, it is likely that the treatment has coincided with the disease burnout. He has prescribed only Clobetasol for me, which most of you already have. He looked at my scalp with a small device - wish I had asked what it was - and said the evidence he saw of inflammation led him to think that my disease was beginning to burn out. He has given me a note for my GP to prescribe Clarelux shampoo(clobetasol) or Bettamousse. He said that these are not readily available in the UK, which is why he has given him a choice. I have to return to see him in two months. I do not know yet what the consultation cost - they will send a bill. You can be referred to him by your GP, but medecines will be at the NHS rate since he notifies the GP of what to prescribe (free in Scotland). His name is Dr Colin Fleming, Consultant Dermatologist and Mohs Micrographic Surgeon, BSc, Mb ChB FRCP. He was incredibly nice and gave me such confidence, which I hope is not misplaced! :-( I had printed out a lot of the comments from our forum and he very patiently read them. If any of you fancy going to see him, Dundee is on the main rail line between London and Aberdeen. The hospital is Fernbrae, 329 Perth Road, Dundee.

Comment by MairiM on September 19, 2012 at 5:36pm

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