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Comment by Heidi Short UK on October 1, 2012 at 11:40am

Hi Everyone, I hope your grandchildren didn't wear you out yoo much Celia! This is the address I used when I wrote, Dr.Matthew Harries, Consultant Dermatologist,Dermantology Unit, Salford Royal NHS Foundation Trust,Stott Lane,Salford,M6 8HD. This is the email address that came back with the reply,Jean.Brock@srft.nhs.uk but I haven't had a reply from the email I sent him, so i would say you are better writting to him! Celia I did the same as you this week, I've been using the expensive Philip Kingsley itchy scalp shampoo conditioner and tonic but I ran out so I also used Tresemme. I might get some T Gel shampoo/conditioner as that is good for an itchy head and would probably be good for inflamation and a hell of alot cheaper!! The philip Kingsley one is nice but I haven't seen any great improvement really, well time will tell!

Comment by PamW San Diego, CA, USA on September 30, 2012 at 3:54pm

Today is a much better day. I am not as itchy and don't have the burning feeling. I just wish I knew why today is different than yesterday. What makes one day worse than the others? Thank goodness for the good days!

Comment by Heidi Short UK on September 30, 2012 at 7:54am

I'm sorry you had such a bad day Pam, hopefully you'll have a better one today! I must say I don't get the burning or itching on my head, actually saying that I do get this terrible itching in my salivary glands, I wander if its part of the same thing. I have been to see specialists ear,nose and throat doctors, I've had exploritory tubes and dye passed through my salivary glands and xrays taken, but nothibg is found, they put it down to being allergic to something! So I take antihistamines most days, I suppose with our type of bodies, its all to do with our sensitive auto-ammune systems but I wander if its more relivant to having FFA.(Thats one to ask the dermotologist in a couple of weeks!) Well keep your chin up ladies, it's good to talk! X

Comment by PamW San Diego, CA, USA on September 29, 2012 at 8:17pm

Glad you are doing well, Heidi. I am like you -- I told a lot of people. But, I am selective about the people I tell. I don't want to talk about it all day because then I never get a break from it.

I actually was thinking of all of you today, because I have had an awful day. Burning, itching; and not just my head -- all over my body. Plus I have seen lots of hair flying all over the place today. The only thing that I can think of is -- I had a flu shot yesterday.

I have tried to be gluten free for almost two weeks. I don't think it has made a bit of a difference. Just makes it harder to go out to eat with my husband and friends!

I am miserable tonight. Hopefully tomorrow will be a better day.

Comment by Heidi Short UK on September 29, 2012 at 6:41pm

Hi everyone sorry I haven't been on line for a while. I've been busy at work and although I have kept an eye on whats going on, I've just felt I've got nothing important to say!I think I'm coming to realise that its not suddenly going to all fall out. I still think people don't notice it yet unless I tell them. I think I'm a bit different to some of you as I've told loads of people about my problem! I don't know if its because I want to get my side of the story in before they notice my receeding hair. They all say they wouln't have noticed unless i said, or are they just being polite! At the moment i don't feel so depressed about it, I'm not happy about it but its not overwhelming me like it first did. I do know that having this group has really helped me,just having somewhere to sound off or find out the newest info, so thanks ladies!! I'm going to see a different dermotologist in a couple of weeks so I'll keep you updated.

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?

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