Comment

Comment by Classical Anne in NC mountains on May 22, 2014 at 12:14pm

Mandy, thanks for the long anticipated encouragement!  We all want to know someone whose condition has stabilized.  So happy for you.

On a historical note, I imagine many may have already noted the obvious resemblance to FFA seen in portraits of Queen Elizabeth the First, of 16th century England.  Just thought I'd share with you a link to a series of her portraits, as it appears she was already losing hair at a very young age.  In 1546, when she was just 13, she had begun looping her side hair forward, in an attempt to cover the bald temples.  Just for fun: http://www.luminarium.org/renlit/elizface.htm

I suppose it's a plus to be related to Royalty?!?

 

Comment by Mary on May 21, 2014 at 6:26pm

Great news Mandy. Encouraging. Thanks for sharing

Comment by MJ on May 21, 2014 at 6:12pm

Mandy, that is so exciting and encouraging! Thanks for sharing your good news. MJ

Comment by Mandy on May 21, 2014 at 5:20pm

Ladies just had to share.Saw consultant today.No signs of more hair lose new hair growth was confirmed. Biopsy showed no Lupus antibodies and very small signs of active FFA. He feels it is very very slow progressing or maybe starting to burn out. He has discharge me and told me to carry on what I am doing because it is working for me. I can see him any time in the future if I have concerns. I was diagnosed with out a biopsy last March but this new consultant wanted the biopsy so the took three samples in February. I have not taken any medication since January 2014 but use Protopic now and then.I do use teatree and rosemary oil once a week, Healthy diet, Lots of walking and a multi vitamins etc. I know this May be only short lived but it's all good for now

Comment by Kaz on May 21, 2014 at 3:53am

Hi MJ
Thankyou for sharing , i will let you know if it slows down within the next 6 mths being on this healthier eating regime , fingers crossed or I will be searching for wigs :(
I have already had my eyebrows tattooed and it was the best thing.
Here's hopeing everyone's treatment works x

Comment by Jen on May 20, 2014 at 10:19pm

MJ, I have continued to have hair loss, more slowly, even though I am not having injections.  The most intense losses occurred at the injection sites within one week of treatment.  I think that for me the injections are accelerating the loss plus the area is completely bald. The areas of loss where no injections were done  can be disguised somewhat effectively with dark eye shadow. 

Comment by MJ on May 20, 2014 at 6:55pm

Jen,
I have to wonder if the injections somehow accellerate the loss. I just had one bald spot, which seemed to expand after the biopsy. And then my front hairline loss came on faster right after i had injections. I am sorry for your loss.
Kaz,
It might be worth a try. I jumped into everything all at once. So it is impossible for me to tell what has stabilized me. I do anti inflammatory diet and mostly gluten and dairy free as well. Also did alot of breathing and mental imagery stuff, acupuncture,mat the same time as starting the plaquinel, clobetasol and rogaine. Having some vision changes and will see what the eye doc says next month. MJ

Comment by Kaz on May 20, 2014 at 5:20pm

Hi Annie
Thankyou for sharing your information. I'm leaning more towards fighting this with a natural paelo diet hoping this might slow it down before I take the heavy drugs. This sight has shown me I'm not alone in this, I was feeling very sorry for myself but now after reading all the posts I know it's not the end and there's wigs etc out there to help cover the hairloss.. Thankyou

Comment by Annie on May 20, 2014 at 1:00pm

Hi Kaz, Welcome to our group.  Sorry to hear about your ffa diagnosis.  I was diagnosed in March 2013 & have been taking Plaquenil for almost 11 months.  My doctor started me off with one pill per day for two weeks to allow time for my body to adjust.  I have been taking it twice a day since then.  My side effects have been minimal.  I had strange (not scary) dreams and a little trouble falling asleep for the first month.  My blood work has always been fine, & I haven't had any trouble with my vision.  I think the Plaquenil and topical steroid combination I'm using are helping, but it works so slow that you barely notice.  My scalp is much less tender than a year ago.  It took me about nine months to see a change in the hair loss.  I'm still shedding, but not as much.  Good luck to you and God bless.

Comment by Kaz on May 20, 2014 at 2:27am

Hi
I'm new to this site and I have just been told I have FFA. I have been put on Planquil and it scares me a little as it could cause a lot of side effects.
Is anyone on here using the same medication and is it working for you.
Thanks

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