Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 253
Latest Activity: 9 hours ago

Discussion Forum

Acupuncture

Started by Dragon&Fox. Last reply by Dragon&Fox on Tuesday. 3 Replies

I thought I'd post this comment I made in another thread. I was recently assigned a different Acupuncturist since the other left the practice and WOW!!  2 weeks after this new guy's treatment, the inflammation started to go away!!  I went to my…Continue

So much hair loss from Rogaine!

Started by Rachel218. Last reply by femmemuscle on Monday. 15 Replies

Hi all, I started using Rogaine a little over a month ago. At first I was using the 2.5% liquid however I was having major dandruff with that so I switched to the 5% foam and the dandruff is better but my hair loss has tripled and I'm really worried…Continue

Haircuts and styles

Started by Lo. Last reply by Dragon&Fox on Sunday. 6 Replies

So... Wondering if anyone out there would be willing to share the hairstyle they use to cover areas of FFA. I know some folks are private about pictures, but would love to see some different styling options and what has worked for people who are…Continue

Natural or Organic Products

Started by Ann Wilson. Last reply by Dragon&Fox on Sunday. 12 Replies

Has anyone has success with using organic aor natural shampoos, conditions, supplements, etc? That is any success in slowing the progression of FFA? I'm really starting to become fearful of using so many drugs as many of the other ladies are doing…Continue

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Comment by Classical Anne in NC mountains on June 22, 2015 at 5:16pm

Yes, but my derm has been happy to supply me with samples that have lasted 18 months now, though I only use it on my eyebrows.  Ask your MD for samples, it's an outrageously expensive Rx

Comment by MJ on June 22, 2015 at 4:56pm
Rachel,
Elidel is a prescription.
Comment by sadandunsure on June 22, 2015 at 12:23pm

Anyone feel the injections made hair loss worse? I only had one round, but in the past 1.5months, my temple is a lot thinner. Could be this action was already set in course or the injections accelerated it, my hairloss had not been rapid before.

Comment by Rachel218 on June 22, 2015 at 6:34am
Thanks for the responses. MJ, is Elidel a prescription ?
Comment by MJ on June 21, 2015 at 9:49pm
Rachel,
I did notice some baby hair shedding when I first started rogaine. I cannot say I that I have had new growth from the rogaine, but the thought is that it feeds the follicle to help combat the attack on the follicle. So I use it in the frontal area religiously. I think it has helped sustains my eyebrows for sure. Elidel has also helped with my eyebrows.
Comment by Classical Anne in NC mountains on June 21, 2015 at 11:06am

Rachel, I do not use Rogaine on my scalp -- only on my brows, where it definitely has helped some.  But I understand from several sources that the scalp hair shedding with Rogaine is a natural part of the progress.  Others have said that they then saw much improvement.  You might want to start a new question thread about it.

Best wishes,

Anne

Comment by Rachel218 on June 21, 2015 at 10:50am
MJ, did you have the same thing happen to you with Rogaine ?
Comment by MJ on June 21, 2015 at 9:17am
Rachel,
I think there must be a hormonal component especially since one treatment plan includes finastride. I would like to mention however that the shedding may be related to something else going on as well. My doctor explained to me that this is not a shedding disorder but rather a growth disorder.
Comment by Rachel218 on June 20, 2015 at 3:10pm
I don't know if anyone else has experienced this but I got my menstral cycle yesterday and my scalp was very sore and tender and I noticed how much my more my hair is shedding. This just leads me to believe that there is a hormone component to this. Has anyone gone the route of seeing an endocrinologist ? I'm so afraid of continuing to use Rogaine as I've been shedding much more and how much thinner my hair looks . I've been on it for about a month now and I do notice little hairs sprouting on the front which gives me some hope but with all this extra shedding it really scares me!
Comment by Brooke on June 18, 2015 at 9:00pm

I'm really interested in the comments about omeprazole since I've been taking it for years and have FFA.  I checked online for side effects and alopecia is listed as a rare side effect of the drug.  I'm gradually decreasing the dose, starting with one capsule every other day, because I've read you can experience a rebound of acid reflux otherwise.  I'm replacing the omeprazole with famotidine, which is supposed to be safer.  Also, someone mentioned they are from Portland, OR and I'm wondering if you are seeing Dr Roberts/Desai as I am. Dr Desai said there might be some interest in a support group among her Portland patients but neither of us followed up.  I think the Portland FFA member mentioned some success with finesteride--I'd like to try the finesteride again but it made me depressed when I first tried it.  Right now I'm doing the injections, doxycycline, and plaquinil and hair loss is minimal.  I'm seeing some regrowth of eyebrows using rogaine once a day, even though the doctor said it wouldn't help.  Thanks to all of you brave contributors to this forum; it is really helpful for technical info and moral support!

 

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