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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

Comment by Paula uk on March 23, 2014 at 1:39pm

Hi all,
Celia- thankyou so much for lunch yesterday. It was great to have the opportunity to meet some other ladies from this site.best wishes to you all.
Px

Comment by Meme on March 23, 2014 at 12:13pm

Oh, sorry Celia, I'm always leaving little plastic boxes lying around. Please dont worry about sending them it will be a good excuse (not that I need one) to come to your barbecue in the summer.

I'm up for being cured!

meme x

Comment by Celia on March 23, 2014 at 9:19am

Thanks for the messages all of you - the pleasure was mine - just to have a chat and see you again and to meet new ladies.  You are all so positive and inspiring ! I have one pretty umbrella with butterflies on that was left here and also Meme's  little plastic pots - I will keep these for you unless you would like me to send them - otherwise......we'll have a barbecue late summer when the weather is balmy and we will all be cured by then.  Best wishes. x

Comment by Polly UK on March 23, 2014 at 9:06am

Thank you so much Celia for the excellent lunch and warm welcome to your lovely home. It was really good to meet up and share experiences and I hope we can keep in touch and meet up again. Following conversations yesterday about food allergies I have decided to cut out wheat and see if it helps alleviate some of my wierd symptoms.
Celia, the Turmeric Extra which contains Bromelain and also Curcumin, Piperine and Ginger and was recommended on here by Debs is by Veganicity from Health Plus online. It's £11.95 for 30 tablets.

Thanks again Celia and good wishes to all - Polly xxx

Comment by Pam on March 23, 2014 at 7:44am

Celia

Thank you so much for the lovely lunch yesterday - it was so kind of you to give us all a chance to get together, and I think we all had a really good time! It was so nice being able to have the opportunity to meet up with other members of the forum and talk freely about our condition - I hope we will all keep in touch, and meet up again! Best wishes to everyone,

Pam

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