Comment

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!

Comment by Jules UK on December 3, 2012 at 8:21am

Celia -did Dr Harries comment on the 3M drops or minoxidil? I'm just waiting for a call back from my GP about whether I can continue to dye my hair whilst using Protopic, and about its connection with skin tumours. Debs - do you wear a full wig or a hairpiece? I suppose I'm "fortunate" that my hair has gone from the sides first and is only now thinning at the front so haven't needed a wig yet. My husband has suggested that I simply let FFA take its course naturally, buy a wig and get on with life. He did say it was easy for him to think that way, but it had also crossed my mind. X

Comment by Debs on December 3, 2012 at 6:04am

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.

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