"Burnout" of FFA. Has anyone actually experienced it?

I was recently diagnosed with FFA at age 64 and my derma keeps telling me it will eventually "burnout." I think she might just be telling me that, because nothing exists to really halt the disease. From all the entries I have read no one every mentions that they have reached that phase. Maybe I am just hopeful, because I am still in shock from receiving the diagnosis and just hope it will go away.  Please chime in if you have achieved burnout.  

Also, I was considering trying some of the stronger drugs such as Avodart(dutasteride) and planequil, but the medical info on Avodart said it should "never be handled or taken by a woman".  Now that is pretty scary to me. I see my derma tomorrow and am considering trying Rogaine and steroid injections at this phase in the disease. Perhaps as things progress, I will get braver and try something stronger. 

Like many others of you I take blood pressure and thyroid meds.  I wonder if there is a connection to FFA.

Sorry for rambling, but I am still trying to wrap my head around my diagnosis. I especially worry, because with so few of us having this non-life threatening disease and 95% of us more being women, it is unlikely that any medical research funding will go toward finding a cure.  We are on our own to figure out how to manage FFA. 

Mary 

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Permalink Reply by Annie on June 17, 2014 at 11:12am

Mary,

I'm sorry to hear about your ffa diagnosis.  I was diagnosed with ffa in March 2013, but think it started at least two years earlier when I started noticing menopause symptoms.  I have never taken blood pressure meds, but I have noticed that my blood pressure has been gradually creeping up for the last few years (not enough to take meds, however).  I have always worked out and eaten healthy and have never understood why my blood pressure should continue to creep up.   

I've been taking plaquenil for almost a year.  I had a little trouble with strange dreams (not scary) and sensitivity to light for the first few weeks, but other than that, I haven't experienced any side effects.  My annual eye exam is scheduled in July, but I haven't noticed any change in my vision prescription.  I apply a topical to my scalp as well as taking the plaquenil, and it took about ten months to notice a difference in my shedding.  The shedding hasn't stopped, but I used to see about 20-30 hairs on my bathroom counter when I dried my hair, and I'm seeing about 10-12 these days.  My doctor said at my appointment two months ago that he could see some areas where the ffa is starting to burn out, but there were a few stubborn areas that were still active.  Regarding burnout:  I have seen 3 doctors, and think each one has a different idea of what burnout means.  I think my current doctor uses the term burnout for inactive.  I realize that I could experience a flareup at any time.  Most doctors agree that it will eventually burn out completely, and I'm just hoping to lose as little hair as possible until then.

There is a group on this site especially for ffa with tons of information about prescription medications and natural alternatives.  I have learned more from reading information posted there than from the doctors I've seen or searching the internet.  Most of all, I know that I'm not alone in this.  God bless and good luck to you. 

Annie

Permalink Reply by Debs on June 17, 2014 at 5:14pm
Mary please email me, i have typed up a fact sheet about FFA, several of your hypotheses are incorrect. You need factual info to be able to make informed decisions about treatment options.

In short, yes it does burn out, at different times/degree of hair loss anything from 2 to 8 centimetres. The meds you are taking have not caused it. Research is happening into FFA.

The fact sheet will get you up to speed, just let me have an email address and i can send it as an attachment.
Permalink Reply by Irene on June 20, 2014 at 12:05am

Hi Debs, I would be interested in the fact sheet too since I have been recently diagnosed and trying to decide which drugs to take. Thanks. Irene

Permalink Reply by Joy on November 16, 2014 at 4:46am

HAve any of you been taking osteoporosis meds before FFA occurred?

Permalink Reply by claire on February 12, 2016 at 11:03am
Yes I have been taking alondronic acid for about 3 years. My derm is suggesting I try the anti immune drug mycofenolate. Has any one else been prescribed this drug.
Claire.
Permalink Reply by Joy on November 16, 2014 at 4:47am

eveisjoyful@gmail.com please send the fact sheet

Permalink Reply by Joking Jo on April 14, 2017 at 6:19pm
Hi I too have been recently diagnosed with FFA. I am seeing my derm next week and I would like to be forearmed with as much accurate information as possible. Could you please send your fact sheet to me? I would be very greatful. I'm still in the 'shock. Oh hell! Not me!' phase.
Jampic99@gmail.com. Many thanks and I'm so glad to have joined this group!!
Permalink Reply by Robin on February 12, 2016 at 8:46am

Hello Mary, was just looking through the discussions and saw yours. I am working to slow and "burn out" my FFA. A lot of time has passed since you posted.....wondering how you are doing?

thanks, Robin

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