Comment

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

Comment by Jen on May 16, 2014 at 12:16pm

I know exactly when I started FFA. It was one month after my husband's death I noticed two round spots one by the widow's peak and the other behind the right ear. There was a third tiny spot by my right temple. I did nothing for 8 months thinking it would come back. After 8 months I showed it to my derm  who diagnosed and injected immediately. Within a week, I lost my entire hairline in the injected areas. About one inch. Then later I lost around the ears. I also have a dent in the right temple. I cover it with hair that I pull forward. I do not want to take any drugs internally since my family have a history of several life threatening illness. Since the injections are causing dents and the hair is falling out anyway, I will not be seeking continued treatment. I am trying to concentrate on hairstyles to disguise the choppy hairline until I can no longer disguise it.  I am interested in hearing from anyone who have used hairpieces effectively.

Love to all you brave girls,

Jen. 

Comment by MJ on May 16, 2014 at 10:32am

April, that is my situation exactly, but I think a very stressful episode caused a speedup which prompted me to notice it. And I wonder if now that I have changed my diet, health and no longer feel anxious, it has slowed because of that, rather than the drugs. Would really like to get off drugs as quickly as possible before new health issues arise from them. MJ

Comment by April on May 16, 2014 at 10:07am

Rebecca, I haven't taken cyclosporine, but I've seen it mentioned in the recent, large study that was done on FFA. They said it was effective, slightly less so then finasteride I think. Did your doctor say how long you would be on it? MJ, I am wondering about burn out too. If it exists and how long does it take! I just went through some old photos of myself looking at my hairline. I can see the beginnings of the hair loss 5 years ago. It has just gone so slow for me that I didn't even know it was happening for a long time. Now I'm wondering if the treatment I am doing is actually helping or if my hair loss is just really slow anyway...

Comment by MJ on May 14, 2014 at 5:34pm

Me too on the hairline obsession! In fact, I saw a woman just today in the market and tried to keep sneaking glances at her! Meme, your comment prompts me to ask about your 10 years of FFA. I have heard so much that the condition will reach a point of burnout. I had my derm follow up appt. last week and was told I was "stable." Based on a review of the photos from my first visit in January, both docs seemed to think I had some growth in the non scarred area. I would really like to hear some cases where burnout has been reached and on average how long it took.
MJ

Comment by Meme on May 14, 2014 at 5:09pm

I know what you mean. I am constantly looking at womans hairlines. I have been tempted sometimes to approach them for a chat but have never had the courage. I went for nearly 10 years without knowing what my condition was so maybe they are in the same situation.

 

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