What does really help? Regular medicines of alternative therapy?

Hi there,

I'm new on the forum; I'm a Dutch woman and have FFA since 2014, but officially diagnosed in april 2015. I already lost quite some hear around the face, but still can hide it quite good (not totally..) with the rest of my hair. I searched through the internet to find all kind of information about FFA. 

What I'm most curious about, is that sometimes I read articles about the disease stopping after a few months of medication. But most of the time I read that people are suffering FFA for many years and using medications that don't really help. Also I read that doctors are not sure if medication will help, or if the disease extinguishes by itself. So...what's true?

And did anyone try to use alternative therapy with succes? That means diets, anti-inflammation food (like kurkuma etc.), acupuncture, osteopathy, or even other creams to put on the head?

My derm gave me Topicorte coisteroide cream and Placquenil tablets. I hate to put on the cream, it's the same as thick Nivea-crème. I have to use it every day, so I need to wash my hair about 3 times every morning to get it out...

I refuse to be negative about the situation, so I decided to be positive and keep on looking for the best treatment. But what's best?

My derm told me not to spoil to much money and time on alternative therapy which won't help, but..does regular therapy help?

I'm very curious about your opinion!

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Replies to This Discussion

Permalink Reply by Jeanne on March 3, 2016 at 3:36pm

hallo Meike

sorry dat ik je nog niet geantwoord heb,maar ik zag nu pas je reactie! Ik benbegonnen met een soort dieet en voedingssuplementen. Ik vond het zo afschuwelijk om maar niets te doen en een soort lijdzaam gaan afwachten terwijl er haar verdwijnt! Ik geef het een half jaar.Ik ben zo ongeveer hetzelfde kwijt als jij en kan het ook verbergen door mijn haar op een bepaalde manier te dragen.Alleen als de wind waait enzo....

ik ben met iemand anders en de Alopeciavereniging bezig om meer bekendheid te geven aan FFA.Ook evt een dag/middag te organiseren voor "lotgenoten". Ik geef mn emaiadres hier even door,is misschien makkelijker om verder te mailen:ataylor@casema.nl

ik vind het leuk om van je te horen

groetjes

Jeanne

Permalink Reply by Jeanne on October 23, 2016 at 10:57am

hallo Meike,

Ben benieuwd hoe het nu met je gaat. In het blad van de Alopeciavereniging hebben twee vrouwen met FFA,waarvan ik er een ben,hun verhaal gedaan.

Wij doen daarin ook een oproep aan andere "FFA vrouwen"om zich bij ons aan te melden als ze interesse hebben in een "koffieochtend/middag"met lotgenoten.

Mocht je interesse hebben,laat dan wat van je horen op bovenstaand mailadres.

groetjes

Jeanne (Anja)

Permalink Reply by ammie on February 6, 2016 at 8:12am

I've been taking Plaquenil for about six months and noticed a reduction in the amount of flaking I had on my scalp in the "active" area. I started Finasteride three months. The flaking is completely gone since I started taking it. I found a study online that showed one patient had some regrowth after using it for a year. Here's a link: http://www.jaadcasereports.org/action/showFullTextImages?pii=S2352-...

Looks promising but the disease is so unpredictable and everyone is so different it's hard to know for sure. 

Permalink Reply by DragonandFox on February 8, 2016 at 6:00pm

I take finasteride too but I'm not sure it's really helping. I tried the Plaquenil but about a week after taking it the dormant stomach ulcer I have, came back so I can't take that stuff.

Permalink Reply by Jeanne on February 9, 2016 at 3:54am

hello Ammie and Dragon &Fox,

you are both using Finasteride.

Doesn't it give any side effects?

Permalink Reply by ammie on February 10, 2016 at 10:01am

I take finasteride but I just started three months ago so I can't say if it is really helping or not. I have noticed that the flakes I had have gone away. I'm not sure what that means though. I haven't noticed any side effects. 

Permalink Reply by Cheryl on February 13, 2016 at 11:43pm
Finasteride does have some side effects, I noticed weight gain and a heaviness feeling in my breasts, confirmed by my dermatologist as possible side effects. It is working for me ( i am on 1/2 dose right now and breast symptoms are gone) My inflammation is almost gone, and some hair growth in small tufts.
Permalink Reply by SmileNL on February 17, 2016 at 1:25pm

This sounds promising..! Cheryl and Ammie, you both say you've noticed some hair growth? And you also have FFA.

That's very interesting for me, because my derm said that once you loose the hair, it will never grow back because the skin is one big scarve, which doesn't allow any hair to grow back.

Funny how unpredictable and unknown everything is..

Permalink Reply by SJC on February 17, 2016 at 4:16pm

Hello All,

I posted this on the NC Sufferers topic, yet thought I would share here.  And to add to it, I do have side effects.  I've become flabbier (and am an avid healthy eater and exerciser, so this kills me), have zero libido, flushing  and some mood swings.  I'm educating my PCP about Finesteride and now we're starting to test my hormones every couple of months to ensure Fin isn't jacking with my thyroid, estrogen or testosterone and putting my hormones out of balance. 

Just wanted to let you know that I've been on Finesteride for about 3 months.  I am seeing hair growth at the front. It has grown about 3 inches and looks to be of normal coarseness and type.  My biopsy showed that I did indeed have unscarred follicles in addition to those affected by FFA.    I'm not sure if the Finesteride itself stopped my shedding as I was also on oral steroids because the shed was very bad (two bad sheds within a 6 months period of time) and we were having a terrible time controlling it.  My doc thinks I have a secondary type of alopecia in addition to the FFA.  So, while I've lost about 2/3rds of my hair all over my head (I had very thick hair), I feel there is hope and I am generally pleased with Finesteride. 

Permalink Reply by DragonandFox on April 19, 2016 at 9:26pm

oh WOW!!  This IS exactly what I've been suffering but I thought I'm just a fatty patty now and that's that.  I do notice some baby hair happening where the receding temples had TONS.  I need to look into this.  My current Dermatologist is not big on informing me of side effects unless it's serious, like the eye thingy that could happen with Plaquenil, which I can't take because of my stomach problems.

Permalink Reply by DW on April 19, 2016 at 10:42pm
I also was taking finasteride, unfortunately I haven't noticed any regrowth - I took it for 3 months which isn't really very long but stopped as I found that I was experiencing a permanent flushing of my cheeks. I discontinued it a month ago and the flushing is still present :(
Permalink Reply by DragonandFox on April 19, 2016 at 9:22pm

not any that I have noticed Jeanne.  Maybe I'm suffering side effects and I don;t even know that's what 's happening.  I get really sick of this sickness. 

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