Comment

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.

Comment by MairiM on December 2, 2012 at 5:46pm

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.

Comment by PamW San Diego, CA, USA on December 2, 2012 at 11:08am

Celia, two things. One Plaquenil does help some people. If it didn't doctors would not prescribe it. It takes 3 to 4 months for it to get into your bloodstream so the sooner you get on it, the better you will be. Two, I have scar on my eyebrow from a fall I took as a kid. The makeup artist went right over it a few times so that it would match the other brow. You will feel so much better with eyebrows.

Did Dr. Harries mention Actos? Why does he prefer Protopic? I wonder if we can get that in the US?

I wish I knew a wig expert. I think if we knew that we can still look good wearing hair, we would all calm down. Hugs to you, Celia. You are an inspiration.

Comment by Liz on December 2, 2012 at 10:02am

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

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