Celia, thanks for your information. Perhaps you were disappointed that you didn't learn more but realistically, we know there is not much informationv available - you went to the best and that is great. It sounds like you received some excellent care and meds plus you will be seeing him often. Very encouraging.
I was thinking that it sometime might be interesting for us to do our own mini research ie: each of us taking one or two ideas of what we think might have caused the auto-immune and then comparing to see if there is any kind of consensus among us on any one thing. Maybe, after the holidays I will suggest it??

Hi Pam, Thanks for the doctor's names in LA and SF. I will definitely consider going there after I evaluate my next appointment in SD, January.
Your information about the hair root is interesting - you have done your research - good girl! it made me consider that I am not applying the Clobasel correctly. I am just dabbing it on so now I will try using more.
Good luck at your appointment tomorrow.

Jules - no, I don't wear a wig at the moment... I am starting to wear them out socially and will go into them at work in the New Year because my hair looks messy. I will get to my GP and sort out an appointment with Dr Harries. Liz, it really is ridiculous how long we have to wait for appointments with this condition. I waited from March to July to get my 1st consulation with a derm. I had a really lovely experience last night with the ladies at the Alopecia UK support group. One lady has FFA... I could not believe it. It definately is not as rare as these doctors are trying to make out. She was wearing a custom made hair system, it was completely undetectable and totally blends in with her own hair. It just covered the front part of her hairline and she gets that done in Bond Street, London. www.greatlookinghairlondon.com Simon - 07949 207848 if anyone in the UK wants to give it a go. I can thoroughly recommend going to a support group. It was a relief to meet people that have experienced hair loss. Everyone was very friendly. I will definately go back.

The drug HYDROXYCHLOROQUINE SULPHATE 200mg twice a day is being used to treat other types of scarring alopeica - I have just got this info off another alopeica support website. This anti-malarial drug has been mentioned now by several ladies in this group and I am seeing it talked about on 2 other alopecia users websites. Dr Harries has talked to Celia about this drug also.

You know what I'd like, apart from offers of medication I'd like the doctors to offer advice and nuturing. I'd like them to be interested, to spend time with us when we see them, and to feel that they take us seriously and really care. If, which it appears is the case, they dont know much about the condition, there are better ways of being told. It's possible to give bad news but in a nicer more helpful way...Anyway, thank you all for making this crazy condition more bearable. I'm prepared to go balder in your lovely company :o)

Liz, I agree with you completely. In fact I wrote a letter of complaint to my GP a couple of weeks ago. When he told me last December that I had alopecia he was very brusque and it put me in a complete tail-spin that I am only now coming out of. He ruled out any drugs and just left me to get on with it. I have received a letter from the surgery saying in future he will give out some self help info for people with hair loss: I told him the website address of this site and a few others. This is a common theme that GPs don't show any understanding for alopecia. I have told my surgery I refuse to be treated by this GP any more. I have an appointment on Monday morning to ask for a referal to Dr Harries and to ask about my 2 NHS wigs I can get free. I am sure they will be terrible quality but I can use them for on the beach or whatever... XXX

Liz and Debs, I agree also about the doctors not being very understanding of this condition. When I was diagnosed in March 2012, my Derm had done a biopsy and then told me it was FFA. He told me there were some drugs being used but he didn't recommend them because of side effects. And that was it. He said some women lose the whole front half of their hair and it would continue till it just stops. He seemed somewhat sympathetic, but didn't offer any other treatment, counseling or support. He had seen only a few other women in my town with this condition. I held my emotions together until I left, but I was too much in shock to think of asking any other questions. I've thought of going to another dermatologist, but I'm sure it will be the same, and my insurance wasn't covering the diagnosis and it was very expensive to keep going. I'm not sure if my insurance would cover a wig, probably would for someone with hair loss from cancer treatment, but I don't know about alopecia. So I'm just hoping to hold on to the hair I have left and try to cover the rest.

Celia, so happy for you that Eyebrow Day went well. It would probably take some getting used to it, but easier for you in the long run. Have a great evening!

Hi everyone! Celia your eyebrows will calm down in a few days, I love mine, I feel more complete with them, just make sure you keep them from drying out for the first week, as if they scab up too much it will lift the pigment too.
Liz have you thought of jumping the que to see a private dermotologist. When I was first realised I had a problem and it wasn't going away my GP did lots of blood test but nothing was found, he then suggested I saw a derm I was sobbing so much I think he was embarassed!! I was in such a state I asked if I could go privately, he wrote a letter straight away and then I rang my local Nuffeild private hospital and I got an appointment 2 weeks later. It cost £150.00 for my first consultation and £90 for a follow up about 6 weeks later. Once I realised that there was not much else he could do and so I didn't have to pay any more I asked my GP to put me under the NHS derm, thats who I am with now. I know it is a lot of money but I rather that than waiting around getting more and more depressed and ancious, it was a small price to pay for peace of mind!

Oh and Celia, you are right, if it was the doctor's wife or mother being affected they would much more concerned about it and looking for treatments. I've heard there is an Alopecia support group in Omaha, Ne which is near me but I haven't gone to a meeting. I should look more into it.

There is a support group in San Diego that I am thinking of attending; I think it's so true that being around others who are experiencing the same thing is healing. I so appreciate this forum, even though I post rarely; but I also look forward to being in the company of women who have walked this journey.

Started Actos tonight. Keep your fingers crossed for me! My dermatologist said to use the Clobetasol on areas that have redness. It works by stopping the itchiness and the inflammation. Be careful on areas near temples and nape of neck because it can cause thinning.

Celia, you will love your eyebrows. My gal said they have to be touched up every year.

Wonder if we can skype with each other????

Lace, as I am rather new to this, I would appreciate your info on the San Diego group. From what some of the ladies have been saying the support groupa are helpful. I am out of town right now but return to SD soon.

Hey Judy--I just read about it on the internet; apparently they have meetings every other month at the Mission Valley Library. I think I missed their November gathering, but will try to make the next one.

I just checked the website: there's some social event happening on the 8th of this month. For your future reference, the website is:

http://www.alopeciaareatasandiego.org

I hope you do some events--I would love to meet you, and Pam as well. It would be a shame if we all lived in the same area and never met.

Hi Pam, good luck with the actos. X

Sounds good.

Good Luck Pam!!
Did you ever get feedback from Carol Sue on her experience with ACTOS? Do you feel that the Plaquenil did not work and are you still taking that as well?

Hmmmm, I have an appointment with Dr. Barbosa at the end of the month. I'm going to talk to her about it. Since going off the Clobetasol, my skin has really improved but I feel more prickling sensation in the front of my hairline and it does seem to be thinning and receding more. I have not felt a thing until the last 3 months. Now my eyebrows are nearly gone and I do have more receding at the front of my hairline.I'm in the midst of alot of stress at work so that may be contributing. Anyway, based on what I've read only the ACTOS is actually treating the condition as opposed to the symptoms.However, it is not a cure. But hopefully, it will stop it in in's tracks!! Keep up posted on how it is going.

Lacy and Pam - looking forward to our get-together. I will be back in January...
Pam, I am so sorry you are having such problems. I am sure you know this but isn't loosing hair one of the possible side effects of Plaquenil? Perhaps you are one of those side-effect statistics? I sincerely hope the Actos changes things.
I guess I am not at that point yet. My hair is thinner and the loss at forehead and temples is significant but, the mystery to me is... Where had that hair disappeared to??? Or maybe my eyes are worse than I thought.
Celia, I will do my profile next week-- so glad you started it.
I have a few other questions:
1.Wondering if anyone lost most of their body hair also... like arms, legs and for older women, my age, that ugly, ugly chin hair? (That is the one blessing here.)
2. Some of us suffered excessive stress prior to getting the autoimmun dusirder & FAA. I realize this is far-fetched but just wondering if there are others.
3. How many have that red, rash-like spot between the eyebrows?

I have been very lucky this week, I got to meet Celia for a coffee on Tuesday and on Monday evening when I attend an alopecia support group I met another lady with FFA. It was great to be able to talk to ladies that have the exact same condition as me and who understand what I am experiencing and Celia your brows look very natural they did a great job. xx

I asked my GP today to refer me to Dr Harries at Salford, she said yes, so I am waiting for my date. I am going to fly to Manchester from Heathrow and then it is only 15 miles from the airport to the hospital so I can get a taxi. I hope the date comes through soon. I also asked about NHS providing wigs, she has not done this before and is writing to the surgical appliance dept of my local hospital to sort it out - I have already bought a few myself but I will take the NHS wigs and can use them for swimming and stuff like that if they are not very nice. This GP was very obliging, I was worried that I might have to really fight my corner to get referred but she agreed very easily, so anyone else in the UK that is thinking of asking for a referal to Dr Harris, I would say definately go for it.

Celia- Its a shame I don't live nearer, I would love to meet up! Can you tell me what is Protopic and why you have to wash your hair every day?

I don't know how to, but I wouldn't mind skyping!

Jules - good luck with Dr Harries today. I will be thinking of you.
Barbara - welcome to the group. XXX

Chris, I think it is. I don't see hair all over the place anymore, the redness is down and itching and burning only occurs if I don't eat right. I am taking 15 mg per day. Let me know what you decide!

Another gal on another board says it helped her and she started noticing the difference after being on the drug for about 4 weeks. I am on for a little over 20 days. She says she sees regrowth -- I always thought regrowth was impossible. I will be happy if things don't get worse.

Actos is actually a diabetic drug that changes the way your body metabolizes carbs. The research is showing that toxic lipids are attacking the sebaceous glands which are located near our hair follicles. The toxic lipids are a byproduct of the way we metabolize. There is a gene called PPAR(g) which is turned off in LPP and FFA patients. The Actos turns the gene back on. Actos is the brand name but the generic name is something like Piglatezone. Actos has been known to cause bladder cancer and heart problems in patients who have taken it for a long time and at high dosages, so doctors are reluctant to prescribe it. My doctors gave me the ok because I would take it for a few months only and at a very low dose. I have been reluctant to comment because I don't want to give people false hope. However, I have noticed a difference in the amount of hair that I have shed. Also my scalp is less bothered. My bad days are when I eat gluten. I was on Doxy for three to 4 months and went off because the specialist I saw didn't think it was going to make a difference. It does have anti-inflammatory properties so derms prescribe it because they want to keep the inflammation down. inflammation is what causes our hair follicle to let go of the hair and eventually scar over to protect itself. Actos has been the only drug that has been shown to stop the hair loss. There is a doctor, Dr. Vera Price, out of the University of San Francisco who has done a lot of research for CARF and they found out about Actos. It is not the "standard" in treatment because there hasn't been enough research.

Hallo everyone. Sorry I havent been on much. I hope that everyone had a good Christmas. I popped to my Gp this morning who says that she'll refer me to Dr Harries so hurrah for that :o)I'm now thinking of having a fringe which I havent had for about 25 years.Hopefully I have enough hair to make one! xx

Yippee... my letter came yesterday, I have an appointment with Dr Harries on 22 Feb. Celia, a quick question... on my letter it says I have an appointment with Dr Harries team - did your letter read like that, I just wondered if I am seeing the man himself or one of his colleagues? I live near London so I am going to fly to Manchester and the hospital is 15 miles from the airport so I will take a cab, I considered driving up but don't really fancy such a long drive there. Pam, appreciate your explanation of Actos and the process of why/how we are losing our hair and the PPAR gene.

Hi Pam and everyone. . .I haven't been posting much. The Holidaze had me going and work has been crazy. The good thing is that I don't tend to think too much about FFA. I had a check-in with Dr. Barbosa. I had a first appt. with her back in September. She promptly took me off Clobetasol steroid and substituted Protopic topical ointment for reducing redness. Also started my on Plaquenil 200mg 1X per day as well as Biotin 5000 mcg, Iron 325, Vit D3 1000 IU. I was continuing with 1.25 of Finestride from my previous doc. My scalp/skin condition is definitely improved with less redness but the shedding continues. So I was looking to try something else. I wanted her opinion of Actos. She wanted to increase the Plaquenil to 200 mg 2X/day before going on the Actos. She said that she wanted to try this course of treatment for alittle longer with an increased dose instead of switching it up. I had heard good things about Actos but she warned that it would need to be a temporary treatment measure of no more than 4-6 months, that there was not enough documentation out there to feel comfortable with long-term useage, also that there is some risk of congestive heart failure and swelling/fluid retention. She said that if I was not experiencing a slowing of symptoms by my next appt. she would consider it. Then she said that in her experience FFA usually takes 1-3 inches and stops. . . that it seems to claim as much of the hairline as it is going to claim regardless of what we do. I'm pretty depressed about this as she is very knowledgeable and pretty active in CARF. Similar to the stories that CJ heard with the symposium in Canada. The PPAR receptors and the sebaceous glands is where the new research is but the studies are still mouse studies and hair is such a complex issue. Look at all the bald men out there who would rather have hair—a huge market yet all we have is minoxidil. I'm still applying that once per day. So for now I have an increased dose of 200 mg Plaquenil 2X per day and Protopic at night and Minoxidil in the morning. She took me off the finestride as she doubts it is doing anything. If my hair all drops off, we'll know that that was the thing that was keeping it on my head!! I was complaining about how greasy Protopic is and she gave some samples of Eledel cream to try. Also the Protopic is so expensive—like $300/small tube. So that is where my meds are at the moment. I wish I could report some new break-through. I'm very curious about the Actos since it seems like it goes to the "root" of the problem. Keep us posted Pam.

Hello everyone, I am a 63 year old woman who was diagnosed with frontal scarring alopecia at the end of November. I'm using topical treatments, had a round of injections and am taking an anti-inflammatory pill. I am located in Ottawa ON and would be interested in contact with other alopecians in my area to share experiences and obtain advice.

Hi, Janice. Welcome to the group. I think you will find a lot of support from this group. One of our members, CJ, is from Canada and she may be able to help you locate a support group. Good luck to you!

What is the Plaquenil suppose to do? Is it suppose to relieve the itching and inflammation? I was also offered Methotrexate, has anyone tried that? I only take doxycycline right now 40 mg. It has relieved the itching, still have hair loss though. I am hesitant to take the Plaquenil unless it will regrow my hair. I'm scared of the side effects, since I feel a drug started all my problems. I read that LP can be triggered by chemical reaction or stress. Anyway my New's Year Resolution is to try to wear my wigs in public more. It's funny I wear them to work every day and I don't think twice about it, but anywhere else I get apprehensive. What is the big deal, it's only a wig. I worked in Oncology for ten years and everyone wore wigs and at that time I never thought one thing about the ladies wearing them. Did not cross my mind that OMG she is wearing a wig! I wish I had that mindset for myself. Anyway I ordered 2 wigs this weekend and I picked something out of the ordinary. If I'm going to wear wigs, I might as well make it fun. Happy New Year and God Bless!