My impression was that the Clobetasol was to help with itching and burning. The itching is caused by the inflammation. So, if you are not red, sore and itching, then perhaps the inflammation is minimal(?) Just a guess. Mari, when you initially used the Minoxidyl did it cause you to shed? Also, can you tell me if you put it all over your head or in just the bald areas?

Thanks for sharing Pam and Mari. I guess we three are doing the same treatment. Hydroxycloride is the generic for Plaquenil, right?
Actually, I am using Clobetasol lotion , a clear liquid. She said to use it every day or every other day. It cleared up the inflamation and itching right away. I also have been wondering if I should be using when scalp is clear. Still, the hair loss continues. I can't imagine another med with more side effects that Hydroxycloride. I was terrible sick for the 1st 2 weeks but now am fine and am glad i didn't quit. Thanks to this group.
I don't see my dermatologist until January. She said it would take about 2 months to see if the meds are working. She has one other patient they are following with FAA. Wish there was just one doctor who specializes in this in San Diego. I would think UCSD would be the best bet. I think that the reason they know so little could be that there is not a great amount of women with this and they just don't fund research for something that is non life threatening and with so few.

I am on straiaght Medicare so I think it would be covered for me, plus my best friend lives very close to UCLA - her husband works there.. How did you hear about this doctor and do you remember his name??

Hello Pam, thanks very much for posting this info for us all to share. It will be interesting to compare the advice Celia is given by Dr Harries. I hope you are able to relax a bit now and enjoy your weekend. xx

Pam, I was thinking the same as you... Celia may just be having some time to relax after her consultation on Thursday, I certainly hope that she did not have any upsetting prognosis. xx

Pam - I haven't had any hair loss with the Minoxidyl. I've been making partings all over the top of my head and applying it. My thinking was that I need this hair to be in good condition to cover up the gapsin front! This may be totally wrong, but there's no clear guidance from the medics. The minoxidyl was prescribed by my consultant - we are lucky that we get prescriptions free in Scotland.

Good evening to all.
One of the best Portuguese dermatologist that I consulted in Oporto, told me that the implant is not possible, since the skin is healed, therefore, has no pores to breathe. He gave me an example, "it's like trying to plant trees on cement." We can only hope that the hair stop falling.
So, let's enjoy the weekend and relax our mind and be happy!!!

Celia, thanks so much for passing on this info. At least we all know what the options are for us and we are as best informed as the dermatologists themselves. I am very pleased for you that Dr Harries gave you some treatment on the day. Both you and Pam have now mentioned the anti-malarial meds as a treatment. I will look into that too. Thanks again, enjoy your weekend. XX

Hi Sandy. I have a good knitting pattern for ones that are wide at the front and thin at the back. If you google etsy you can buy either the patterns or finished items. I have also made some material ones which work well :o)
Hi Celia. Thanks for the feedback on your appointment with Dr Harries. It seems like he is doing all he can and he certainly sounds more thorough than my doctor. I guess that as more and more people are diagnosed with it it will become more known and researched. I would like to get it talked about on tv and in magazines but Im not sure how. I contacted embaressing bodies but the answerphone told me that they dont need anyone else until next year. Do you or anyone else have any ideas?
xx

The consultant I saw is called Dr Colin Fleming at Fernbrae Hospital, Dundee. He didn't say that he had a particular interest, but he did say that he had seen a number of cases of FFA.

I have emailled Dr Harries on the email that Celia gave us all before, to ask how I get a consultation, it is a pain that we have to go to Sheffield, I have asked in the email if he can treat me remotely via my own GP.. to save me the journey, but if he can't I will just fly up there. A lady with FFA on the Alopecia UK website has posted a cream PIMECROLINUS is being presribed for FFA - it is an anti-inflammatory normally used for other skin complaints. Re the wide headbands, I have just had 5 arrive from a website in the USA, lovely big wide ones in pretty colours www.coveryourhair.com I will be able to wear them to the gym and the beach on holiday, or if you just need to run out of the house quickly to nip to the shops. They are fine for casual use. Tonight I go to my first support group meeting with the Alopecia UK group. I know we are a minority group in alopecians but I do need to engage with people that understand hair loss.

Debs - you have to ask your own GP and he will refer you. Dr Harries said in my letter he would accept a referral from my GP and I think they have to do this under NHS requirements for choice. Good luck!

Hope you find the support group tonight usefull Debs. I've now come off all my meds. The steroids were giving me nosebleeds. I'm not sure if and what I'll try next. The first thing I shall do on Wednesday is go and see my doctor and moan to him or her about not seeing the dermatoligist until next June.

I shall talk to my doctor about Dr Harries Celia. I haven't had any cream prescribed.

How do I know if I have inflammation Celia? I have no itching or redness. If I pull on any hairs they come out so I guess the FFA is active but other than the hair loss I have nothing else.

I am the same as you, liz - no inflammation or redness. My hair loss has almost stopped, though, I hope not temporarily. Dr Fleming said he couldn't see inflammation with his little gadget. Wish I had thought to ask if it is too deep seated, in our cases, to be seen. Also didn't ask if the clobetasol could actually reach any inflammation, if it isn't near the surface of the skin. If you ask your GP you should get to see Dr Harries in 6-8 weeks and then you can ask him. It's just not right that you have to wait until June.

The inflammation begins deep at the root of the hair near the sebaceous gland. See if you can google a sketch of a hair follicle. The damage occurs at the root of the follicle, near the gland. The gland secretes a toxic lipid, which causes our auto immune system to attack the follicle. The follicle scars over and the hair falls out and is never replaced by a new one. I am going to my regular derm tomorrow and I will ask her about the redness (if I remember). Menopause has made my brain mush.

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.