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Comment by Debs on December 4, 2012 at 4:36am

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.

Comment by PamW San Diego, CA, USA on December 3, 2012 at 11:25pm

Judy, I was told to dab the Clobetasol. You dont want to use too much because it can thin our scalp. I think the clobetasol is for itching, burning which occurs at the surface. The attack that is going on deep down cannot be treated with a topical (that is my opinion). I believe that this is why our disease is so difficult. Doctors treat the symptoms but cant get at the "root cause" (sorry formthe bad pun). Eve though the redness and itch are gone, hair continues to fall because of the attack deep within. The only drug thatvtheybfeel actually stops the hair from falling has been Actos. My docsnare reluctant to let me try that but some people have tried with success. One of the earlier members, Carol Sue, was on Actos. Mari, what do you think slowed down your hair loss?

Comment by Judy on December 3, 2012 at 9:03pm

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.

Comment by Judy on December 3, 2012 at 8:54pm

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??

Comment by PamW San Diego, CA, USA on December 3, 2012 at 6:37pm

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.

Comment by MairiM on December 3, 2012 at 6:25pm

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.

Comment by Liz on December 3, 2012 at 4:31pm

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.

Comment by Liz on December 3, 2012 at 2:37pm

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

Comment by Liz on December 3, 2012 at 10:58am

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.

Comment by MairiM on December 3, 2012 at 8:22am

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!

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