Comment

Comment by Debs on March 28, 2014 at 3:26am

Kath, FFA affects females however there are other cicatrical alopecia that affect males too. The CARF meeting I attended in London back in Novemver was lead by 3 derms and they used photos to explain all the cicatrical alopecias. Some of the others are horrific, dreadful sores and such like, our FFA is actually the 'milder' I think having seen what the other cicatricals are like. Treatment options are the same.

Comment by Annie on March 27, 2014 at 6:41pm

Hi all, just wanted to comment on a couple of your comments.  C, I also read the study that said that Plaquenil works best in the first 6 months, but I've also read articles (including one in the last CARF newsletter) that say it can take 9-10 months to see visible results.  I've been taking it for almost 9 months and the redness has definitely subsided.  I also think the hairloss may not be quite as bad.  I still have pain, especially when the wind blows, but it's better.  I think Plaquenil works so gradually that you barely notice it. 

Mandy, my experience with pain is very much like yours.  It seems like it got much worse after my diagnosis.  Do you think it's the topical?  I stopped using mine last summer, but had to start using it again when I had a flareup. 

Comment by Kath UK on March 27, 2014 at 5:40pm

Hi Celia - a few months ago I found and read the article you were quoting from.  It seems to say that if Hydroxy doesn't work within 6 months there's no point staying on it and that was what my dermatologist told me last time I saw her (just before she said there was basically no point in me seeing her again!). 

I hate to sound negative but it looks to me as if at the moment none of the doctors anywhere know of any medication that will stop FFA.  I've stopped using any medication except for Dermovate (clobetasol lotion) which I only use occasionally now.  My hair is still disappearing and there seems to be nothing I can do except just accept it as a fact of life.

Let's hope that eventually a cure will be found - if not for us then at least for our daughters and granddaughters. 

By the way - are men never affected by FFA or only rarely?  I kind of assumed that all the members of this support group are ladies.  Am I wrong about that?

Comment by Mandy on March 27, 2014 at 5:31pm

Hi Ladies not posted anything for a while so here we go with a quick update...
March 2013 went to GP who knew straight away I had FFA gave me Betnovate to once once a day and Doxycycline to take once a day ahe knew this is what the consultants were starting with.
August 2013 saw first consultant she took me off both and gave me Dermovate, took bloods, photos etc. Saw her again in November 2013 I had stopped Dermovate as it burnt my scalp so she said to go back on Betnovate and start Hydroxychloroquine twice a day. I also food out I had a weak positive of lupus antibodies possibly due to taking Doxycycline as lupus can be drug induced!
Terrible side effects to Hydrochloroquine... When taking twice a day racing heart tremors and shaking hands and legs and mood change this led to a visit to A&E and I was advices to stop and contact my consultant but was told it could take 2 weeks to leave my body. Counsel taint said to wait 2 weeks and try agin 1 tablet a day with my evening meal. Second tell managed 10 days once agin racing heart,shakes, mood changes, anxiety and this time a rash that covered my body... Another visit to A&E and told to stop and that it could take 2 to 4 weeks to leave my body!
This was follow by 5 weeks off work due to stress and anxiety.
February 2014 - new consultant, new bloods, photos, in depth examination and give Protopic. He explained 3 ways things could go... 1 it could burn out... 2 untreated it would bubble along until at some point it would burn out... 3 treat with topical, or oral or both kinds of medication and it may slow or suppress progress until it burns out... At present no cure!
What have I learnt...
My head was not red,sore or itchy before I used medication and my hair loss was less too!
I have alway eaten healthily but I do exercise more now and I have lost weight :0)
Did I let it consume my life yes... Do I now? Sometimes... And I'm working on this.
Will I take oral medication... No never again unless it is the CURE!
Will I use topicals... Yes for a while... Thinking for the next six months
When I need to I have decide to use hair fibres and maybe a topper instead of a wig as the consultant did say the the FFA is only active at the front of my hair going back about 2 inches
Next steps... When I see the consultant next I will have the results of my biopsy... He thinks it will confirm the FFA/LP and I hope for some news regarding to lupus antibodies.
For now I intend to make the best of a bad thing... Try to stay positive and enjoy my life.
Sorry to go on lovely ladies be I know everyone like to know who different people get on with different medication xxx

Comment by KarenGinny - Iowa, US on March 27, 2014 at 5:21pm

Celia and Brenda,  I am currently taking Methotrexate 3 pills 2 times a day, once a week. I've been on it about a month and do notice my scalp is a little less itchy, but may not see real results for a while. My current derm did a biopsy and thinks I have LPP instead of FFA like my 1st derm said, but it's all very similar I believe, and most of my hair loss is in the front hairline. I had tried the plaquenil but had to stop when it gave me a rash.

Comment by Brenda, IL US on March 27, 2014 at 3:45pm

C:  I declined methotrexate last november because i catch every virus and bug that goes around.  I dont need my immune system suppressed.  Plus i had a very bad reaction to imuran another immunosuppresant.  But i may decide to try the methotrexate.  My hair loss is more noticeable by the day.

Comment by Brenda, IL US on March 27, 2014 at 3:40pm

Marian i have taken plaquenil for almost three years now for lupus.  I first noticed my hair loss in Nov. 2010. I was diagnosed with lupus in March 2011. Plaquenil has helped my lupus but hasnt had any effect on my FFA.  I'm on all the medications you are on with no improvement.  My dermatologist asked me if i wanted methotrexate but i declined it last november.  I see her next week and i might give it a try.  Im still looking at wigs but havent made any decision yet.

Comment by Marian on March 27, 2014 at 2:53pm

I have been on plaquenil for years for Lupus and it has not prevented my getting FFA or stopped it. Perhaps it has slowed down the progress but how is that measured as there seems to be no true benchmarks to be had. I am on plaquenil, Doxy, steroid shots, clobestol steroid cream, Rogaine and oh yeah an anti inflammatory diet that I mostly adhere to. My FFA and LP just goes on its merry way no matter what I throw at it. I am just wondering how many of us have moved to the next level and are wearing a topper or wig?

Comment by Celia on March 27, 2014 at 1:49pm

Hello all, just doing a bit of research, copied this piece dated 2 years ago :-

Unfortunately, there is no proven cure for frontal fibrosing alopecia (FFA).^[3]  However, because hair loss in frontal fibrosing alopecia (FFA) is thought to be caused by inflammation of hair follicles, treatment often involves using anti-inflammatory medications or ointments, such as corticosteroids or hydroxychloroquine (brand name Plaquenil), to reduce inflammation and suppress the body's immune system.^[2]  One study of 36 individuals with FFA found a significant reduction in symptoms after six months of hydroxychloroquine treatment; however, they found minimal benefit to continuing hydroxychloroquine treatment after six months.^[4]  Researchers continue to question whether or not treatment is effective, or if hair loss in FFA stops naturally.^[5]

Shall we hope it stops naturally ?    I have taken Hydroxy for 9 months or so.  Stopped it about 3 weeks ago - no real difference noted.

I have a friend who has rheumatoid arthritis and hydroxychloroquine is listed as drug used to alleviate symptoms of this - we know this anyway - she takes methatraxate (sp. prob wrong)  I have seen this drug on lists of possibles for auto immune diseases, any thoughts, anyone ?

Comment by Jules UK on March 25, 2014 at 8:58am

A belated thank you to Celia for a lovely day on Saturday.  You always make us so welcome! And it was good to see new faces as well as the familiar friends. 

Jules x

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